My knees are definitely hurting. It’s hard to accept and acknowledge that chronic pain is a reality of lupus. I want to look lupus in the face and say- YOU DON’T SCARE ME! BRING IT. I always think that if you can mentally challenge this disease you can limit the difficulties associated with it. Maybe that isn’t true, but mind over matter, right?
When I was in 11th grade my aunt Jayne put up an amazing fight against stage 4 brain cancer. While my memory of the details has faded greatly, I do remember her mental strength despite the physical limitations that were placed upon her due to the severity of the disease. Her mental determination has left an imprint on me and how I live my life. I cannot allow this disease to mentally consume me and my existence. If I allow it to, it will.
While this is all true, I do get afraid from time to time. My Rheumie and I spoke about physical pain that I have experienced. When my joints are hurting is it because I just worked out? Or is it the lupus? It can be difficult to distinguish between the two. The Rheumie told me that while it’s good that I’m cautious, I tend to be overly cautious. So as I sit here rubbing my knees I am left wondering- would any person who exerts themselves as much as I have feel what I’m experiencing? Is this a “normal” pain or a “lupus pain.”
In the past I have addressed the pain as my body’s way of saying hey – you have lupus… chill out and sit on the couch tonight… don’t forget the chocolate… or the popcorn.
This develops into me avoiding working out in an effort to preserve my body from pain. This is followed by me eventually needing to workout, but experiencing pain because I’m out of shape which leads to me avoiding working out because I question if it’s lupus which leads to me to getting depressed that I’m out of shape which leads me to working out because it’s important to my overall health which leads to pain because I’m out of shape… IT’S A CYCLE! I am living in a constant attempt to overcome this disease mentally.
How do I experience lupus?
I have systemic lupus (SLE). Symptoms vary from person to person, but I experience the disease most commonly in the following ways:
- Joint point: fingers, hands, wrists, and knees.
- Fatigue
- Sensitivity to sunlight
- Skin rash on occasion which is called a “butterfly” rash – sounds adorable. It’s not.
- Raynaud’s phenomenon
How do I treat lupus?
I take an antimalarial medication- that’s right. Hydroxychloroquine, or Plaquenil®, prevents/treats malaria. Makes no sense to you? It treats the symptoms I experience, not the disease itself. This medication helps to relieve some lupus symptoms, such as fatigue, rashes, joint pain or mouth sores. As a result I regularly go to an ophthalmologist because the medication I take can damage the retina of the eye, causing vision problems.
Can my symptoms change?
Yes. I was in “remission” for a long time. I hate that it’s called remission… lupus doesn’t go away and currently there is no cure. After my flare my symptoms slightly changed and are now being monitored by increasing my dosage of plaquenil.
What’s the prognosis?
The prognosis of this disease varies depending on its severity. At one point I was convinced I was going to have failing organs and die- those of you that know me know I was a melodramatic teenager (don’t even comment on what I’m like as an adult!).
I am determined to live a normal, full, long, fulfilling life. I know that living with a chronic disease can’t all be mind over matter- I also have to live smart. The Lupus Foundation of America suggests the following:
- follow the instructions of their physician,
- take their medication(s) as prescribed, and
- know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus.
For now I’m going to take care of myself, listen to what my body tells me, be honest with my Rheumie, and om my way to internal happiness.
Before an appointment with my Rheumie. He is about to yell at me that I need to be wearing my sunblock at all times.
52 Miles per Month 
I am sorry to hear what you are going through. From your picture you look like you are in pretty good shape. My problems are no where near yours and I seem to get upset and down pretty often hence I can imagine how it must be for you. Hang in there and push as hard as you can for your goals. You sound like you have a very strong mind from this one post I read and it will only get stronger with time.
Yes- 10 years in the making! I wasn’t always as strong as I currently am. It’s part of the acceptance process. I find writing to be an outlet for things I was never able to articulate when I was sixteen. Please continue to read and know that you are not alone in your feelings! And believe me, I’m so appreciative for the fact that it honestly could be worse and I have a very supportive network of people in my life.