I have a recurring nightmare…
I am having a normal day, playing with my children, talking with my husband, sitting at my table eating dinner; when without warning my body gives out on me. I feel my hands begin to tingle. Then my arms and legs go numb. I stop speaking in mid-sentence and, for a moment, feel merely bewildered, rather than frightened. I feel my body ooze to the floor as if I had suddenly begun to transform from a solid to a liquid. I am not injured by the slow-motion fall. I lie on the floor paralyzed, completely unable to move. I cannot even open my lips in a silent scream. I can scream only in my mind and I feel fear begin to build. I mentally call out for help; focusing all my effort on somehow telepathically communicating my distress. Sometimes I am alone in my dream. At other times I am not and I watch as my husband or my family hover over me, concerned, but seemingly at a loss as to what to do. They debate whether or not I should be taken to the emergency room and I mentally bellow, “YES!” but no one hears me, no one understands the horror of my situation. Occasionally I am able to move a hand in my dream and I recall the sign language we are teaching to our children and sign “telephone” and then hold up five, four, one, and one finger in a row trying to entreat those around me to “call 911″, but no ambulance is ever summoned. At this point in the dream I descend into utter terror, wondering if I will ever move again or if I will spend the rest of my days hovering alive, but still, on the cold, dusty wood floor. It is usually at this point that I jerk awake, released from the paralysis of sleep, and lie in the dark. I get up and use the bathroom whether I really need to or not – just to feel my legs moving underneath me confirming that the nightmare is just that. I used to dream of monsters as a girl, specifically a man made out of yellow insulation that lived in the closet which housed our furnace. He was terrifying, and yet, I could walk by that closet because I knew logically that he wasn’t real. I am not nearly as certain that my current nightmare is entirely impossible.
I’ve known for a long time that something was “wrong” with me. I had inexplicable pain that would come and go; at times crushing fatigue, and most memorably broke out in painful bumps on my hands two days before my wedding. The symptoms never painted a complete picture, however. It was only in 2004 that an answer started to emerge. I was making an apple pie – rolling out the crust between two pieces of parchment paper and I gasped in pain. The force of pushing down on the rolling pin had created a pain so sharp in my wrist that I dropped the rolling pin as if it was hot. I examined my wrist closely looking for signs for bruising. I mused as to how I could have broken my wrist without having known it – the pain was so severe. My wrist looked perfectly healthy, but I was unable to finish rolling out the dough. I consulted my primary care physician, I went to urgent care one night when the pain was excruciating. I was diagnosed with carpal tunnel syndrome, tendinitis, and stress. I knew that none of those were the answer. It was my eye doctor who made the connection – she noticed my wrist in a splint and added in my complaints of dry eyes. She asked me about fatigue, transient fevers, and other joint pain to which I replied yes. She sat back and pronounced quietly, “You have rheumatoid arthritis”. She then clarified that she couldn’t be sure; that I should consult a rheumatologist. There were blood tests, bone density scans, X-rays, and MRIs, and finally after three years a definitive diagnosis of rheumatoid arthritis or RA for short.
RA is an auto-immune disease, meaning in simplistic terms, that a portion of the body’s immune system attacks healthy tissue somewhere in the body. In the case of RA, the immune system primarily targets the synovium, the lining of the joints. RA is a systemic disease, however, and is not limited to the joints. Typical symptoms include: fatigue, stiffness, flu-like symptoms, low-grade fever, rheumatoid nodules (lumps of tissue under the skin), muscle pain, involvement of the glands around the eyes and mouth (causing decreased production of tears and saliva), anemia, and abnormally cold extremities. In women some of the same antibodies present in those with RA can lead to miscarriage. The drugs used to treat RA have common side effects of weight-gain, depression, loss of bone density, and increased infection. Less common side effects include life-threatening infections and lymphoma. Many of the drugs are not safe for pregnant or nursing women. RA is a chronic disease, meaning there is no cure. Without treatment RA leads to severe joint problems resulting in the loss of mobility and often organ involvement leading to an early death. With treatment some of those with RA will lead an essentially normal life, others will not respond to treatment at all, while most will fall somewhere in-between. I am one of those in-between.
I rarely ever even try to explain what it is like living with RA. How walking can be so painful one day that I have to use a handicapped placard so that I can park as close as possible to my building and then go for a workout and can applesauce the next. I know it doesn’t make sense to those around me. I doesn’t make sense to me either. Most people have no idea that I am sick at all. They might notice me in a wrist brace from time to time, might notice that I seem to have a rather large number of doctor’s appointments for a thirty-two year old, and might notice that I seem to pop Tylenol and ibuprofen like breath mints. If they know about the RA they comment on how good I look for someone who is “sick”, squinting at my high heels skeptically. The thing is; unless you live with me, you’ll probably never see me looking “bad” – on my worst days I just don’t leave the house. No one realizes that when the pain is bad it doesn’t matter whether I wear my two inch red patent leather heels or slippers; it hurts just the same so I figure I might as well look good. I don’t wear a badge on my chest that says, “I took 17 pills today, how about you?” Living with a chronic disease is a strange thing. I honestly don’t remember what it was like to feel “normal”. A new normal is formed and oddly enough I can often even find myself thinking “I’m not really that sick” because they way I feel seems so typical at this point.
I had the nightmare several times in the past few weeks. It is interesting to me that I should have it now. I am on the lowest dose of prednisone I have been on in four years. I am am able to exercise fairly regularly. And more often than not, that handicapped placard stays tucked away in the center console of my car. My RA is not “that bad”. Then I woke up on Sunday around 9:00 am and was back asleep at 11:15. I simply couldn’t stay awake. Yesterday I was so dizzy I had trouble standing. Today my right knee isn’t a joint; but an epicenter of pain. How long will these renewed symptoms last? I have no idea. They might disappear tomorrow or this might be the beginning of the next six months. And to me that is the hardest part of living with a chronic disease. I can handle the pain, but I still don’t know how to deal with the uncertainly. What does RA mean for the rest of my life? Will I slowly morph from a young, capable, woman, into a shell and how can others help me if I do? That is my nightmare. Sometimes I just wish I dreamed of big hairy monsters.
Do you have any dreams that are too close for comfort?