“It is the night, my body’s weak, I’m on the run, no time to sleep. I’ve got to ride, ride like the wind, to be free again.”
Those lyrics describe how I feel in my attempt to outrun the doctor whenever I have an upcoming appointment, or require extra medical care.
Recently, I was speaking with another butterfly warrior who also has experienced swelling around the lining of her heart. She confided to me that she, too, avoids the doctor. Sometimes you go about doing your best to treat it yourself. Why? Because as soon as you go to the hospital and they determine your heart is swollen in any way, it’s almost guaranteed you will be admitted.
I have shared that I no longer reside in the U.S., but it seems that wherever you are, the heart is a pretty big deal. It also seems that because it’s such a big deal, you will be admitted if there is any sign of a problem. For those of us who are chronic sufferers of some crazy symptom (kidneys being attacked, heart being larger, difficulty breathing, etc.), the list changes and grows daily.
However, the one thing that is consistent is that no one wants to be admitted, so it seems everyone does what they can to avoid the doctor at all costs. At least twice a week within my support groups we are nudging someone to go the ER because of something that looks out of control.
People who are not chronically hospitalized have this conception that although you were sick enough to be admitted, that you can finally lay down and get some rest once hospitalized. To these people I point and laugh! Then I laugh some more because the opposite happens. Every few hours there is someone in to take your blood. You were sleeping as peacefully as you possibly could and here they come to wake you up and stick you with needles. Then they ask the extremely personal questions — when was the last time you went to pee, poop? The pee is often measured so when you go there is a catch cup in the toilet. Then you finally get that part settled and a few hours later comes the person with your meal (doesn’t matter if you’re hungry or not; they have a schedule to keep). So, now you must wake up to eat so they can make sure you’re getting your nutrients. A few hours later, if you are getting IV meds, they have to come and administer those. If you have pills to take, those come at times that may not coincide with all the other nonsense mentioned above. My last hospital stay, I had IV meds four times a day: 7 a.m., noon, 7 p.m. and midnight. Needless to say, it was not a restful experience.
Of course, there is the high fashion of your butt hanging out of your hospital gown, and the freezing cold to help keep the room sterile. (Anyone suffering from Raynaud’s will tell you, cold air of any sort will leave you miserable.) When you ask for extra blankets, hospital staff look at you as if you asked for the keys to Fort Knox because you are already under three or four blankets.
My family often fusses at me when I complain of pain, but won’t go to the hospital. I don’t know if I was relieved or saddened by learning that many of us are putting this off for as long as possible. The one thing I will say is that as a chronic pain warrior, after you’ve been on this battlefield for a little while, you know when you truly need to go and when they are going to keep you.
I think many of us have learned where our thresholds are, and when we need to go we do. My dad recently said to me “you need to go whenever you hurt.” I responded “Then you will be sending me my mail there.” I explained to him that the last time I went to the hospital, they didn’t come to get me, I went voluntarily.
Please pay attention to when you really need to go. I won’t tell you to do as I say, because I already have shared what I actually do. However, when I know I really am worried about something, or when I am in pain that is new or worse than I have experienced before, I head to the doctor. Please be sure you are doing something similar; self-care is most important.
We know our bodies better than most. When you need to, ride like the wind to see your healthcare professional so you can be free again.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.