I arrived in his office after waiting 6 years to finally get someone to diagnose and treat my pain symptoms. After waiting an hour to be seen (which ended up making me very late to pick up my preschooler and autistic 1st grader from school), he abruptly and quickly told me about fibromyalgia, and the medication he wanted to use to treat it. He never let me talk or tell him about my history or symptoms. He talked down to me for 5 minutes, then wrote me a script for a pill, then dismissed me. I did like that the first sentence out of his mouth was validating my pain experience. But after that it was kinda downhill. His nursing staff taking my vitals were awesome. The one question I got to jump in and ask at the end was some alternative ways I could seek comfort at home, like stretches, exercises, diet, physical therapy, hot/cold packs, etc. He waved me off and said not really, just see how the meds go and come back in three months.
So I did. The meds did nothing, I lived… with a lot of pain for three more months.
At my next appointment, I waited for one hour AGAIN. Another 5 minute appointment where I was talked over. I did ask my question again, which went unanswered, but I was allowed to inform him that the meds weren’t really doing anything. He told me to double my dose to the max dose. So I did for that evening’s dose. Unfortunately I took my dose about thirty minutes before a formal gala event that was honoring my husband for 10 years of service. Just after I arrived (about an hour after taking my dose) I caused a huge scene and fainted about 5 minutes before they were to present my husband’s award. We were rushed off to Tufts ER, where they treated me like a drug addict. They held me and my husband there in our formal attire, with no food, no water, no blankets, no IV, not even a doctor to look at me for 9 hours. I did not get home to see my children or relieve the babysitter until 5:30AM, driving home after having no sleep, water, or food since about 2PM the previous day. Utter cruelty. Tufts is a whole other issue. But I would have never been there had I not been carelessly prescribed this dosage. I called the office the next day to see if I could stop taking the medication. No one called me back for two weeks, and it wasn’t even he who called. I stopped taking it on my own after one week, as the dosage was causing catatonia, extreme dizziness and nausea, and weakness. I couldn’t get off the floor/couch/bed for days. I had to teach my 4 and 6 year olds to call 911 on my phone in case I fell or wouldn’t wake up. I was so scared, and couldn’t be left alone.
I was so afraid to go back to this dr, I sought out another referral. My new pain dr was appalled that not only was I prescribed the medication I was on (it is a last ditch effort type med, typically other meds are prescribed first), but he was also totally stunned that no one had ever even tried to figure out why I was in pain, and why no one even bothered to take scans or xrays. He immediately sent me for xrays of my neck, spine, and hips and discovered that I have osteoarthritis in my SI joints. I was also prescribed a much gentler pain med after listening to me and finding out that I have sensitivities to certain kinds of medications. And I never wait longer than 5 minutes to be seen, so I can actually go pick up my preschooler on time.
It’s been 6 months since my first appointment with Dr. Kowal, and I still don’t have an effective pain management plan in place, but I would have been 4 months closer to something if I hadnt wasted my time in the first place. I’m tired of throwing spaghetti at the wall and seeing what sticks, know what I mean? I hate this “take this pill and wait for months to see what happens.” It’s taking forever. Meanwhile, I experience my children growing up from the view of the floor or on the couch, through my pain-induced tears and my brain fog. They experience their mom as sick, and never there, untouchable. Always crying or screaming in pain. Always weak and laying down. I want them to know that I like to run and play games, I love laughing and pig piles, and I dance and play music. I want them to know me as living, not suffering.
I’m not interested in B solutions to A problems when it comes to my health and quality of life. I don’t want someone just throwing meds at me to solve my problem. I need someone willing to help me find causes and solutions to my pain and symptom history, and that takes listening and testing. I am not interested in messing myself up with pills. I just want answers. I have to live. I have to be able to care for my kids, I need to be a part of their lives, and their happy times. I can’t do that with doctors who don’t seem interested in their patients’ quality of care. Make your own judgments, this was my experience. I don’t go a single day without worrying about my pain and how to get through a day. I can’t sleep knowing there could be an answer to all of this that no one cares to find. This doctor wasn’t it for me.
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