Remember that heavenly spa treatment I wrote about last week? I forgot to mention that the subject of Lupus came up during my massage. As the massage therapist was beginning my body wrap, he pulled back my towel covering my legs and literally gasped when he saw the bruises on my thighs from the Lovenox shots I took during my pregnancy. I'd temporarily forgotten that the bruises were there, but they caught the therapist's attention immediately. I explained the reason behind the bruising and assured him that they didn't hurt at all - he should continue on with the treatment as planned. And continue he did!
However, the experience reminded me of how desensitized I can become to the effects of my illness. At times, I've become so accustomed to living with the symptoms and side-effects (e.g. the pain, suffering, swelling, or in this present case, bruising), that I forget what "normal" should look and feel like.
I remember an evening years ago when I was in the midst of a terrible flare, with agonizing joint pain so bad I was nauseous. I knew I was in sorry shape, but Johnny and I figured it was just one of those days where the disease was particularly bad - nothing I could do about it but just wait it out until my next dose of medication.
My sister, Katie, knowing I had been feeling bad all week, had offered to have Johnny and me over for dinner so that we didn't have to cook. We had previously accepted the invitation, but once the dinner hour drew near, I realized I was in no shape to leave the house. I called Katie to let her know that I just wasn't feeling up to it, and she and her husband generously offered to bring the dinner to us - the four of us would just eat at our house. (Author's note: everyone who has a chronic illness should have a devoted and loving big sister like I do - she always does what she can to make sure I don't overextend myself. This was a prime example.)
If I recall correctly, I first refused her offer, assuring her that I wasn't in that bad of shape. However, she insisted and eventually I took her up on the offer. The moment she walked in the door, she took one look at me, saw the agony I was in and declared that we were either calling my rheumatologist immediately or rushing to the nearest ER, no questions asked.
Looking back, I now remember how sick I was - my body was literally throbbing because of the pain and my face was slightly disfigured because of the swelling around my eyes, nose, and forehead (swelling that, to this day, has stumped my doctor.) I'm sure I protested calling or going anywhere, but she wouldn' t take "no" for an answer. Johnny and my brother-in-law, Kevin, sided with her, and within minutes, my sister was on the phone with my doctor who was ordering me to the ER at the hospital where he practiced. Although the actual ER experience was a nightmare (another post in and of itself), I ended up on a morphine drip, among other drugs, for the night, checking out the next morning after the pain and swelling had subsided. Johnny and Katie stayed by my bedside all night long - I'm sure they were wishing they had a little drip of their own. I don't think they slept a wink!
Moral of the story: I couldn't see how sick I was - and nor could Johnny. We were just too close to the situation. My symptoms had progressed slowly over the course of the evening and we just figured I had to tough it out. We were simply too accustomed to the terrible side-effects to take action. Thank goodness for a fresh, new perspective from Katie and her husband.
Need a reality check on how bad your symptoms are? Are you hesitating because you think you're supposed to just grin and bear it? Ask a trusted friend or family member for their take on your disease progression. You may have no idea how out of hand your disease has become - and they can give you the perspective you need to get the help you deserve. Don't forget - you're worth it!