First and foremost, kudos to my 6 year old daughter for taking this shot!!! Normally Mommy's camera is like a hot stove...you don't EVER touch it. Today, however, was a day of excruciating head aches, exhaustion, nausea, and joint inflammation. Today this meant Mommy had no will to say, "No way Jose" when Anna asked if she could take a picture. I guess she showed me :)
Somehow I keep hoping, keep going, keep finding the strength to keep fighting. I don't really know how. Today I realized it's them. My husband and my girls. Despite everything, everything that I have lacked these past couple years, they keep going. And most of the time it is with a smile. That's why somehow I can't manage to give up either.
Autoimmune and chronic illness is debilitating and isolating. Our culture today leads to serious misconceptions about illness. Especially ones that can't be readily seen, such as with the person in a wheel chair or the person lacking a limb. Even doctor's present challenges for patients. Many western practitioners tend to treat symptoms rather than the whole person...probably thee most frustrating aspect for a patient who has been suffering for years. And then there is the rest of society. The underlying assumption is that if she is enjoying herself, she must be ok. The fact is we don't have a choice. Depending on the flare the person may not be able to do more than take a shower, but if there is an important occasion or one simply misses the enriching experience of social interaction she puts on her best act and soaks up what she can from the experience. One bit of advice...don't ever assume that because the person you are with is laughing that she is pain free. She has learned to put up with the pain and, more often than not, is doing so at that time.
So although the road ahead is still very long and I certainly have my thoughts of giving up on ever feeling "normal" again, I can't. I still have too much hope to enjoy the little nuances of daily living. Who would have thought a person would be thrilled to hold a cup of coffee with out worry of dropping it, or be excited to get her child dressed in the morning with out sending shots of pain up her hands? Who would have thought life would now be complete if one could simply go for a walk down the street with their husband, open an already-opened jar of jam with out help, eat food with out fear sickness to follow? Life would certainly be complete. Me, visible, no pain, guilt, or embarrassment to hide. My perfect family, just as we are, nothing extraordinary, not wanting for more, just living, just enjoying, just us.