For weeks I have watched my husband struggle with intense pain. Actually, I could say that I have watched him struggle for over a year now, but the last couple of weeks have been particularly intense.
He has a condition called interstitial cystitis. IC is a chronic, severe inflammation of the bladder wall, the cause of which is unknown. Primary symptoms are urinary frequency, urgency, and, for some, severe lower abdominal pain. It is unusual for men to get this disease—my husband is one of the lucky few. For years he was misdiagnosed. When we moved to Georgia and he suddenly had such severe pain we ended up in ER after ER, we faced the usual nonsense about it being in his head, or nothing more to be done. I could tell that some even though my husband was just there to get drugs. Oh, yes, there are some ER doctors I would like to kick in a certain place to give them some inkling of what my husband was going through while they reacted with indifference.
We did finally find a knowledgeable urologist (I actually prayed and searched the Internet and came across the IC Network. I had never heard of the condition before.). Unfortunately, this is not a condition that magically goes away with some medicine. The bladder flares during allergy season, releasing histamines that further irritate it, so he is always on anti-histamines, but still allergy season is hard. Certain foods can aggravate it. Stress can cause the pelvic muscles to spasm. Pain from the bladder causes them to spasm further, so that pain becomes a vicious cycle. He also has urinary retention, so he has a “pacemaker” implanted near his spine to deal with that. But this symptom rules out the aggressive use of muscle relaxants, which could cause further retention. People with IC try all sorts of things—trigger point therapy, special acid-reducing tablets, biofeedback (Journey to the Wild Divine is an excellent program for biofeedback, if anyone needs such a thing). So far there has been no magic bullet for him.
And on it goes. There are days when nothing helps him, when he wishes he weren’t alive (how my heart sinks when he talks of this, although I can understand it). He keeps going to work, although he had to demote himself to a less stressful and lower paying job. He keeps taking the kids on outings. He hates the fact that there are long stretches of time when he snaps at us all and simply wants to disappear. The pain IC patients feel is compared with that of terminal cancer patients. I saw my mother die from cancer, and she was in a lot less pain than my husband. Actually, she was kept pain free.
This has been much on my mind lately, muddled up with questions of God and suffering, the hurricanes, children dead in the flood waters, prayers for healing, my own fears of pain and mortality.