Up until this very morning, it has all been discussion between my doctors and I. Several weeks of hints to a diagnosis, hints of things to come, they have all been leading up to this moment. My joints have been telling a story for months now, between the swelling, and painful moments, the evenings spent curled up on the couch because I was in too much pain to move. The fatigue slid into my life, like a band of thieves stealing precious valuable moments, forcing me to slow down. The butterfly rashes, were finally officially titled as such, and could no longer be passed off as just looking rosy complected that day, now I seem to be forever lightly masked, even on my better days.
Today, April 1, 2014 Systemic Lupus Erythematosus appeared in print, for the first time, and is now officially in my medical record. You would think after hearing so much talk of it from my Hematologist, Ophthalmologist, Rheumatologist’s assistant, and especially from my PCP (we have talked a lot about Lupus) it wouldn’t have affected me the way it did. I was expecting to see it in print this week, just not today, not from Dr. C, my PCP. Today it caught me off guard. It was one of the rare appointments where the word Lupus wasn’t actually spoken, we talked about symptoms and flares, but the word wasn’t mentioned.
It’s funny, I’ve thought long and hard about how I would feel…in that moment, when I saw those words for the first time, because I knew it was coming. I just forgot to consider it might happen today when I went for my weekly PT/INR Check with Dr. C. I simply forgot to consider it might happen like this, and just like that its all too real again, too fast, too sudden, and it’s something I can’t run away from and I have no choice but to accept it, learn to live with it and endure. To fight the good fight, and live life to it’s fullest. In that moment, words of several appointments played through my head, conversations with family and friends resonated loudly, I was saddened, angered at why all of this is happening to me, and even a little relieved all at the same time. Because at least with Lupus, they know what to do with me.
It worked out this way for a reason I know. After processing this for a few hours, I’m glad it was Dr. C that it came from. I have at least a little history with him. I will be meeting my Rheumatologist Thursday for the first time at my follow-up appointment. At least this way, I won’t be emotional in front of a doctor I’ve just met for the first time, because I still have an issue with crying in front of people I have just met. I am thankful to Dr. C for being the one to do this, he has unknowingly made the rest of this week a lot less stressful for me.
Dr. C said something at my appointment today on getting back to a point where I can focus on who Nicole is outside all of the medical stuff going on. This conversation was brought up because I told him I was at a point where talking to a psychologist/counselor would be beneficial, that things had finally calmed down enough that I was starting to process things and needed help. He knows I’ve found some amazing support groups relating to Antiphospholipid Syndrome and Lupus so he didn’t think we needed to focus on support that focused around medical conditions at this time. His words though…focus on who Nicole is, I just hope I can remember.
I know one thing that still remains the same as for who I am, my desire to help others. I will focus on that, and start seeking out ways I can do that. It will at least give me something to do with the energy and give me something to focus on.