You Are Your Own Best Advocate
A Big Thank You to all the farmgirls far and wide who expressed their concern for my health, and also for their best wishes to me after my blog a few weeks ago called “If You Feel Like a Lemon, it Might be Lyme.” I did indeed feel like a lemon … and the good news is that I don’t have Lyme Disease, it was anemia. I am eating loads of spinach, kale and seaweed, taking iron supplements and am back on the road to health. I feel like I have finally rejoined the land of the living! The bad news is that it took forever and a day to get that result reported to me, and I had to become a squeaky gear in the wheels of ‘progress’ that is our current health care world. Had I actually had Lyme (or something worse), those two weeks could have been a critical time during which lack of treatment might have had serious consequences.
Normally, Lyme results are fairly quick reads. One of my friends had hers back in a day; another within 48 hours. Two weeks after the lab took my blood for this and about a dozen other tests, I was still left wondering, “Do I or don’t I?” I started calling daily and actually going down to the lab to see if ‘today might be the day’ I would find out. During this time I was told that my doctor ‘s office had been sent the results, but in reality they had not received them. Then days later someone at the lab told me that Lyme results take 4-6 weeks! I knew this wasn’t right, and thought they must have lost them and were trying to cover it up. It was a frustrating and scary time of waiting and wondering what in the world was wrong with me? I felt like the walking death!
While this story eventually had a happy ending, it reminded me just how important it is to be an advocate for ourselves and our family when it is necessary to do so. I’m generally a very patient person, and I don’t like pushy people or being that way myself. And yet I have plenty of illustrations just in our own rather healthy family case study, (and I’m sure you do, too), to show the importance of being assertive when the occasion calls for it.
Over the years I have been blessed with two excellent personal physicians who are both very smart men, and also very approachable. One was my NYS general physician who saw my family and me through the childbearing and rearing years; the other we’ve had for much of the last decade since we moved to New Hampshire. I have excellent relationships with them both, always get the straight story, neither are alarmists, always taking the least invasive course unless a situation warrants further investigation or action. That said, there were several instances where my maternal instincts came into play and I doggedly pushed the medical professionals to delve further than they wanted to. And thank God I did, when you hear the particulars. I hope it will give you courage if you ever feel intimidated by any medical decision or diagnosis.
The first example actually happened to me personally. I was 43 years old, pregnant for the 5th time, a homeschool mom of 3, and I was building a post and beam house. Earlier in this pregnancy, my low thyroid had been diagnosed and I was taking medication for it and finally feeling good again. But suddenly my heart started doing amazingly scary things, like beating wildly out of control, and also really irregularly at times. The first time I went to my doctor, he listened to my heart and all was normal. “You’re older, pregnant and doing too much. Slow down and take it easy, and you’ll be fine.” The next two times I went back with the same complaint, he ordered a Holter monitor, which is a portable little EKG you wear for a day that will record any problem. But my heart didn’t cooperate and perform its little tricks during this time, so nothing of note was discovered. Next, the doctor requested a blood test that actually showed I had macrocytic anemia. Presumably the treatment for this would fix me up. But it didn’t. So I mustered up the determination I needed to go back for the fourth time within a month. ME … who can go for years and years without ever seeing the inside of a doctor’s office … this was crazy!
I leveled with him. “Look John,” I said, “I’m not a hypochondriac. But I’ve lived with my body long enough to know when it is not working right, and I’m here to tell you that there is something very wrong with my heart.” If you ever go to your doctor and plead your case like this, any legitimate healthcare provider will sit up and take notice, and REALLY listen to you. He ordered an echocardiogram on the spot, which is a painless, non-invasive procedure done at the hospital that records your heart beats and rhythms. Fortunately or unfortunately, depending how you look at it, I had one of these episodes during the test, so it could be verified and evaluated. It was a whopper, too, with my heart racing wildly out of control at the rate of more than 220 beats per minute. Later that evening my doctor called me at the ungodly hour of almost MIDNIGHT, having just received a fax at his home with the results. “If you have any plans to go anywhere in the next few weeks, cancel them,” he said. “Be in my office at 9 am”.
The long and short of it was that I have ventricular tachycardia, a fancy name that basically means a really fast heart beat in a ventrical section of the heart, caused by an electrical short circuit of sorts. I was put on beta blockers, which I take to this day, and the only time I’m ever reminded of the problem is when I forget to take them. Lesson 1: Persevere when you know you must! No one knows your body like you do.
The next example of advocacy I want to share was for Josh, my youngest son. When he was only six weeks old he got a little cold that quickly developed into a wicked cough. I feared pneumonia and took him to the doctor, who told me that his lungs were clear and that he would get over it. But instead of this happening, the cough worsened, scaring me to death. I took him back twice; the first time the doctor cleaned out his nose with a syringe, and was not overly concerned. By the third visit, the cough was so alarming that although I had never heard anyone with the whooping cough before, my research convinced me that IS what he had. In fact, everyone in the family came down with something similar, myself included, although it affected the younger ones much more severely than the older ones. My doctor emphatically told me that there had not been any cases of whooping cough in NYS for a long time (this was 17 years ago), and that he couldn’t possibly have it. The doctor sent me home to ride it out, and then he promptly went on his summer vacation. Little Josh would cough that very characteristic ‘whoop’ until he was blue in the face and then would literally collapse and fall asleep from exhaustion from each round of coughing. The following Monday morning I took him to a friend’s pediatrician who gave him a breathing treatment in the office, but who also assured me it was (emphatically) NOT the whooping cough. I wasn’t buying it. You know how in nature, we should never get in the way of a mama bear protecting her cubs? Well that fact transposes well into the human arena when our children are involved. At this point all my fierce, protective maternal instincts came into play on behalf of my sick baby and this Mama Bear wasn’t taking any more nonsense. I asked whether there was a definitive test for the whooping cough? I was told there was, but it would have to be done at a hospital and was not pleasant for the baby, was pricey (since we didn’t have insurance) and would ultimately prove to be a waste of time, especially since he didn’t have the whooping cough. Talk about discouragment tactics! But I was not moved. “I want one,” I demanded, and I wasn’t leaving the office until I had a slip of paper authorizing it. I wasn’t accepting the runaround again this time, and sure enough, I got an apologetic call from the doctor a day or so later telling me that as hard as it was for him to believe, Josh did indeed have the whooping cough. Any mother would have instinctively known this by that point; it’s amazing that two doctors didn’t. Treatment was then begun for all of us. Because he couldn’t lie down without choking/coughing fits, my baby slept upright in our arms for more than 3 months straight while we tried as best we could to sleep sitting up all night in a chair. Lesson #2: ALWAYS go with your gut --- and demand another opinion and a definitive test no matter how much resistance you may get to the contrary, even from people who supposedly know more than you do.
The final example I’ll leave you with almost became a huge tragedy, but not because of any negligence or laxity on behalf of the medical profession. It was due to my fear of being personally branded as a nutcase, and not acting on my instincts, when common sense told me otherwise. But read on! Again, it started with my son Joshua, who came home one day with the most violent stomach virus I had ever seen. It was so extreme with the most intense abdominal pain and vomiting, that I took him to the doctor, believing it to be appendicitis. The doctor told me that it was a very severe norovirus that was rampaging the area. I took him home, but it only got worse. Days later, with him writing on the floor in pain and agony, and the symptoms very much worse, I took him back saying that I very much feared Josh did have appendicitis. They ran a blood test, but just to be sure, they had us see a specialist who examined him and said that it was not. His white blood cell count confirmed this. About this same time, however, our daughter came down with it, but this time I was prepared, and was at least relieved that I could rule out appendicitis! To my horror, our daughter had an even worse case than our son, and I took her back not once, but (get this!), TWICE to our family physician, saying (you guessed it!): that I was convinced that SHE had appendicititis! As it turned out, she didn’t. Then, horror of horrors, our
son Noah came down with it, and this time I was going to ride out the ordeal. Never in my life did I EVER see anyone so ill. For 8 days he was sicker than a dog, worse than his siblings combined had ever been, and for a much longer duration. One day I knew I needed to take him to the doctor, and was convinced that it was more than just a virus. But if I had gone back with a third child for the fifth time saying I thought HE had appendicitis, I was convinced they would brand me as some kind of a nutjob and commit me! I decided to hold off until after the weekend and take him in on Monday morning, if he hadn’t improved. But on Sunday, Noah seemed desperately ill. I called a friend of mine who was a nurse and told her about him. “Get him to the emergency room today. Don’t wait till morning. He needs to be seen now.” I will be forever indebted to her for this.
The ride to the hospital, though only a 10 minute drive, was long and painful. Every bump and pothole I hit nearly sent him through the roof in excrutiating pain. He was admitted immediately, and many doctors and nurses prodded and probed and ordered lab tests. And guess what? He not only had appendicitis, but his appendix had been ruptured for more than 5 days they said. He was so septic they could not even open him up until they got the infection under control days later. What were the chances of this happening, I ask you? And how incredible was the timing of this coming on the heels of his brother and sister’s virus? The ER doctor on call that day took me aside and made me feel totally negligent, saying, “Let me see”, he said … “He’s been violently ill for over a week, vomiting, fever, in pain and losing weight … and this didn’t ring any bells for you?” I felt about as small as anyone could feel. I kept asking the doctors and nurses the same question, “He’s going to be all right, isn’t he?” but no one gave me any sort of definitive answer. Then I began to know how serious this was. After it was all over, the surgeon eventually told me that he had never actually seen anyone in his condition who recovered from it, and had we waited just one more day before bringing him in, he would surely have died. At that moment I knew that in the future, no matter WHAT, I would seek medical attention when it seemed it was needed. Under the circumstances you can see how I was somewhat justified because of the previous virus in the family, but my son almost died, and no amount of justification would have lessened the pain of that. Lesson learned: No matter how foolish I look or what anyone thinks of me, I must act as I see fit.
We must always act responsibly and take the initiative when it comes to our health; we cannot leave important issues only to the ‘experts’. We are our own best advocates, and it is our right to be so. Professionals are there as a resource to serve us, protect us and heal us, but like us, they are not infallible and the ultimate responsibility rests not with them but with us. Working together as a team, we can all work together to stay healthy and get well.
Health care is on everybody’s minds these days as we try to navigate through the muddy waters of a broken system. While space does not allow me to elaborate on that here, I hope through my experiences you will feel empowered to take charge of your health and that of your family’s. Until next time, Farmgirls, Be Well!
Mountain Bounty, Mountain Blessings from Cathi,
The Mountain Farmgirl