You Are Your Own Best Advocate

Have laptop, will travel! The Mountain Farmgirl is traveling for a couple of weeks with her ‘portable office’ and thought this would not only be a good time to give everyone an update on her health, but to talk about the importance of self-advocacy as we all try to blindly navigate through the modern healthcare maze. Join her in the important discussion of “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

Comments

 
By: Patty
On: 11/25/2013 15:01:39
Beautifully written and very true. Not sure why but it seems our intincts have been deadened or perhaps undervalued. It is time to take em out and dust em off because in most cases, they are spot on.
 
By: Kelly
On: 11/26/2013 12:58:59
So glad you are ok! What harrowing tales of your kids-you handled everything beautifully and you are such a great mom! Happy Thanksgiving!!
 
By: Debbie
On: 11/26/2013 13:15:03
In March of 2011 we went from seldom consumers of ocean source foods including salmon to mined salts & seldom consumers of freshwater fish (the ocean has become a military & industrial sewer) due to Fukushima, Japan's 3 meltdowns, ongoing dumping of nuclear waste into the ocean & now the latest development is the risky removal of rods with MOX fuel & potential for a major event with reactor 4. See YouTube.com user Msmilkytheclown1 and other sites such as www.fairewinds.org. www.helencaldicott.com
Yes,while the above actions with food do not eliminate exposure (the ocean IS earth's weather) at least it minimizes it.
 
By: Ann Johnson
On: 11/26/2013 14:19:50
I definitly support you on being an advocate and myself have tons of examples as my son has anxiety, ADD and depression. I am curious as to if you and your famliy had the pertussis vaccine as this would have protected you from this horrible whooping cough. I used work at a company working in production of a vaccine for the whooping cough and one day was accidently covered with live pertussis. Because I was vaccinated as a child I did not get whopping cough.
 
By: janice atkinson
On: 11/26/2013 15:19:07
This happens more than you think. We should always use all or our senses. I have always told my children,now adults, if you sense something, you are right. We need to trust ourselves. The fifth or sixth sense are very real.
 
By: Mary Pitman
On: 11/26/2013 16:28:51
Thanks for sharing your stories. Several times in my children's life, I should have taken them to the ER or dr..........and didn't. We always have regrets. Glad you were a persistent mom! saved their lives!
you are awesome. Thanks for your website. love it.
 
By: Louise Marie
On: 11/26/2013 22:18:15
My situation was similar. On my son's six week follow-up with the pediatrician after being born, i asked him why my son's forehead seemed to be protruding. He said that all baby's heads are misshapen and not to worry about it. In the conversation he mentioned the word hydrocephalus. i could not get that word out of my mind. That evening i called an orthopedist that i knew and explained it to him. He gave me the name of a neurosurgeon who would see my son within just two days. As soon as the doctor saw my son, he knew what was wrong. He began giving me diagnosis and treatment as soon as we walked into the office. We had no insurance because my husband had been laid off due to cutbacks. This doctor and his awesome staff set up everything. The Junior League Clinic paid for everything. Within a matter of a few days i was handing my sweet baby over to the OR nurse. The surgeon had to remove skull from soft spot to soft spot then sew the scalp over his brain. His brain was then able to grow without any restriction of a premature closure of a sagital suture. i am not typically an assertive person, but in this instance i had to be . . . for my child.

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Cathi Belcher

Cathi Belcher,
an old-fashioned farmgirl with a pioneer spirit, lives in the White Mountains of New Hampshire. As a “lifelong learner” in the “Live-Free-or-Die” state, she fiercely values self-reliance, independence, freedom, and fresh mountain air. Married to her childhood sweetheart of 40+ years (a few of them “uphill climbs”), she’s had plenty of time to reinvent herself. From museum curator, restaurant owner, homeschool mom/conference speaker, to post-and-beam house builder and entrepreneur, she’s also a multi-media artist, with an obsession for off-grid living and alternative housing. Cathi owns and operates a 32-room mountain lodge. Her specialty has evolved to include “hermit hospitality” at her rustic cabin in the mountains, where she offers weekend workshops of special interest to women.

“Mountains speak to my soul, and farming is an important part of my heritage. I want to pass on my love of these things to others through my writing. Living in the mountains has its own particular challenges, but I delight in turning them into opportunities from which we can all learn and grow.”

Column content copyright © 2010– Cathi Belcher. All rights reserved.

Mountain Bounty

“Keep close to Nature’s heart ... and break clear away once in awhile to climb a mountain or spend a week in the woods, to wash your spirit clean.”
– John Muir