I try to blog once a month, but you have not heard from me for a longer period. Because I have been ill. Not thankfully with a terminal, life threatening illness, which deserves compassion and respect from all.
Mine was not close to this category of medical seriousness. It began with a bladder infection.......But no antibiotic given could knock it out. One made me so ill that I was in bed with GI symptoms for two days. And the pain increased and increased.
I have been through childbirth twice, and I have been mugged badly. Nothing compared to this pain. It was as if a knife were inside of me, cutting constantly, relentlessly. I was able, through determination, to see my clients and concentrate, but it was hard to think of anything but my symptoms. I cancelled all social plans. Sitting and talking, much less combing my hair and getting dressed to see people socially, seemed an utter impossibility.
When I was not crying, I combed the internet, trying to find relief. I bought books, took extra vitamins (some upset my stomach terribly), changed my diet (even gave up coffee), did everything I could read about, praying that the meds would kick in and the fever and chills would abate. It did not, and they did not.
Finally I was referred to a specialist who dealt with such problems, or so I was told. This experience was one of the most traumatic in my life. The exam was, as you can imagine, terribly painful. And this doctor had neither warmth nor concern. I was but a number, and it was obvious that he was completly disinterested in me and my illness. Both bored him.
I was still in the stirrups, as he was leaving the room, and he called carelessly over his shoulder, "You have Interstitial Cystitis. Not much I can do for you." I tried not to give in to lightheadedness, as he continued, "Get dressed, and come to my office."
Long ago I learned that not all doctors are healers. But this man was a destroyer. In his office, he handed me a card with the names of other physicians I may want to consult, and added that my pain could be due to the mugging of several years ago. He used his computer to order a prescription to relieve muscle pain in my back. He did not tell me to call him again to let me know how I was doing. (The back pain meds, which he never named, never arrived.) I do not remember leaving his office, or walking over a mile home in the bitter cold. I do remember vomiting at a street curb.
Night after night, the "knife" in constant motion, I googled Interstitial Cystitis. I read of those with my symptoms and how they bravely tried to cope and to help each other to cope. I tried everything they tried. I consulted a reflexologist, a chiropractor, a masseuse. My fevers remained, my symptoms worsened.
Finally, I decided to try to find a doctor who was older, perhaps wiser, and hopefully kinder. The holidays were approaching. My adult "children" would be here with their children. I had told them nothing about this. They each had their own challenges in life, and worrying them about something they could do nothing to help me with seemed totally unfair.
And finally, I found a doctor, a urologist, who was a healer. He told me immediately that my diagnosis was inaccurate. With Interstitial Cystitis, one did not have infections, chills and fevers. Only relentless symptoms that are so difficult to control. Plus this illness came to women far younger than I.
He performed an old fashioned treatment in his office, and gave me a different antibiotic. He said I would be uncomfortable for two weeks, but would improve. When I left his office, the knife inside of me was gone. Now, two days later the chills and fever are also gone.
What have I learned from this? I can tell those with a true diagnosis of Interstitial Cystitis that there are some wonderful web sites that can help you. They, of course, could not help me, as I had an infection eating away at my bladder and urethra. I needed both symptomatic relief, as well as the proper meds.
If, per chance, you are a health care provider reading this, please tell "colleagues," such as the one who so terrified me, that they should be ashamed of themselves.
I have always thought I had compassion for those in pain. But my understanding now is far different. I feel it with my heart and every fiber of my being. I am so sad and sorry for one who live with pain, trying everything, working so hard to feel well once again. If only I had a magic wand to offer.
What I can say is not to give up until you find the relief that works for you. And I can also say something to your loved ones and friends: Please be there, and please be kind. Living with acute, relentless pain saps one of all strength. You are truly needed.
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