While I know there are people who suffer greatly with lupus, I am not at that point yet.
I suffer a little bit. I ache, and I have very limited energy. I can't do a lot of the things I wish I could do. My eyes bother me, and I get headaches, sometimes even nausea when I try to read. That's hard, because reading has always been one of my great joys in life.
Travel is difficult for me, and that's hard, because I live quite far from my loved ones. It's always been hard to live far from family, but it seems even harder now, as I am still far from my parents and brother and sister, but now I am also far from my second family, my children who had come to be my precious family, my comfort and my joy. Now they are distant, too. And distance is formidable when you have lupus. Even when you can suck it up and put yourself through the ordeal of travel, you are not yourself once you get there, and you can't enter into the moment as you wish you could.
Additionally, lupus is a very costly disease. The expense is more overwhelming than the actual symptoms, most of the time.
Recently, my husband's company was acquired, and in the acquisition, we got different health insurance, and I can't find any confirmation anywhere that my rheumatologist is a participating provider with the new plan. I've combed the computer data bases, and it looks like she is not. I've called both her office and the insurance people numerous times, but the doctor's office insists that the insurance company is the one who needs to tell me whether the doctor participates with them, and the insurance company insists that it is the doctor who should know which plans she participates with. It is all Blue Cross Blue Shield, but they have so many different plans that the doctors don't know which ones they are participating with, and apparently BCBS doesn't know itself.
So. I have costly panels of lab tests run every 3-4 months, and costly specialist visits to follow up, and costly referrals to other specialists for more costly tests, but nothing makes me feel better. Nothing fixes me. At one appointment, the rheumatologist asked if I'd been having any new pains. I'd been going through a time of waking up in the middle of the night from shooting, horrific pains in my big toes. I told her about it. She looked at me with big, woeful eyes, and--in all seriousness--told me, "If that continues to happen, you can take some ibuprofen." I just sat there, stunned. $240 for an office visit, and this "specialist" is going to tell me to take some ibuprofen for pain?
Not going to lie. Lupus makes me depressed. Between the symptoms and the cost of "treatment" (and I use the term treatment very lightly, because I don't think I am really being treated, only monitored), I can rarely travel to see my kids, and my kids are my joy in life. So I feel that lupus is robbing me of joy.
Additionally, stress causes lupus to worsen. This is scientific, not just in my head. Lupus is an auto-immune disease. That means that my immune system is impaired. Rather than fighting off viruses and bacteria that cause disease, my immune system attacks my body and makes me hurt. Heightened cortisol levels stimulate the immune system to act up and attack even more. Stress causes heightened cortisol levels. Therefore, stress is bad for lupus. But I can't control stress. Anguish over a wayward child, disappointment over not being able to see a distant child, fear of medical tests and medical bills, all these things come into my life and make my body hurt. I can get very discouraged.
I take each day as it comes, because what else can you do? Fighting it adds to the stress. I can choose not to fight. I can choose to take it to Jesus and cry a little, and then dry my tears and trust that He is with me now, and He has a better life in store for me in eternity. I'm getting a new body! Hallelujah! I'll be able to run through fields of daisies for miles, breathing deep and moving my arms and legs. I'll be able to leap and dance and sing and see beauty and bask in the presence of God with no more pain. I have this to look forward to.
In the meantime, I pray a lot, as much as I can. I try to eat well--even though food is often repugnant to me. I eat as well as I can. No gluten because it triggers inflammation. Not too much sugar. As much salad as I can stand. I try to eat well. I try to get exercise, gentle walks, every day. I try to rest.
As long as I baby myself, I do pretty well. It is an awful limitation, an embarrassment to be so weak. I envy people who can entertain and go on trips and decorate their homes and dig in their gardens and handle all manner of projects. I'm doing well if I can figure out how to get to the grocery store along with going to work 12 hours in a week. I'm thankful when I fold the laundry or wash the dishes. A tidy kitchen and clean sheets, that's a blessing. "House beautiful" is another dream I've had to die to.
Dreams I've lost include a tight and loving extended family and a beautiful, full-of-laughter, organized, welcoming home. That's really all I ever wanted, and I do have pieces of them, just not the picture I always dreamed of and longed for. I figure Jesus wants me to die to this, and it is such a bitter pill to swallow.
I know that I should be happy and content with Jesus alone. Jesus should be all I need. Jesus is more than enough. Jesus died for me, gave His blood to pay the price for my sin. Yet, I continue to sin by being discontented and longing for idols of my heart, resenting the things that keep me from them.
Why can't I be grateful for the great salvation that is mine in Christ Jesus? What is wrong with me?
