Standing Tall - The Value of Courage
My mom was a courageous woman. She was an athlete in the 1960s, at a time when women weren't "good girls" if they did such things. She married another athlete. She was born in the middle of war torn Europe during the second world war, she lost a husband, and escaped Communism before I was even 10 years old. By the time I was 20 she had two businesses which grossed over 4 million dollars a year. Today is International Women's Day, and this is a tribute to courage, which I learned at my mother's side.
When I was 2 and a half, I started having severe signs of UPJ obstruction, it was not diagnosed or fixed until I was nearly dead over a year later.
The only reason I'm alive today is because my mom harassed every MD she could until she found someone who did a plausible diagnosis and gave her confidence that he could fix the problem.
Later, my mom faced breast cancer with philosophy and medical courage. Her prognosis was 3 months at stage 4 metastatic breast-bone cancer. And she lived 4 and a half years, plus, not once did she take a painkiller outside of a hospital setting. My mom was a woman of steel. She also cooked every day, and wouldn't go to bed until all the dishes were done... by hand. Her self discipline was legendary in both business and at home.
My mom used to say that I would be a dancer because I put myself into contorted positions and did exercises that stretched the right side of my body in an instinctive attempt to relieve the UPJ pressure. It's true, I do enjoy dancing very much and have always loved exercise and movement. My youth until mid-30s is a continuous story of me playing sports, me hiking, me backpacking with a 30-50 lb pack, and various water sports. Later I kept an organic garden of 1/4 acre in size. If I had 30 minutes, I was outdoors.
So whenever a doctor has told me I needed more exercise, I knew they were pulling my leg. But I was young and easily made to feel guilty because I wanted everyone to love me. I exercised through the pain and kept going until my lung problem (read about my mPE below).
When I was 14, I started having childhood arthritis, Osteoarthritis was not diagnosed until I was 40+. Modern OA associations decry how often kids with arthritis are ignored.
When I was 16, I started to have classic signs of endometriosis and PCOS, but I was told it was normal for girls to have heavy and painful periods and it wasn't diagnosed until I was in my mid 20s (later for PCOS). I lost my fertility permanently because of that.
Around age 18 (about 1991) I started to have pain after every meal and my abdominal discomfort caused me to embrace vegetarianism, and later veganism in search of relief. That check finally bounced in 2011 when the Eat to Live diet (another desperate attempt to lose weight) caused me so much physical pain that I went back to eating omnivorously.
I later discovered that I had a FODMAP problem (inability to digest oligosaccharides and other complex but short carbohydrates). In 2017, I was diagnosed with Non-Celiac Gluten Sensitivity. Because I was already gluten free at the time, I have never had the proper Celiac test, and my Gastro recommends against gluten challenge.
So whenever a doctor told me I needed to watch my diet, I knew they were pulling my leg. By 2011 or so, I was finished with trying to make every doctor love me, or trying to be a "good girl." It took a while, but I realized that doctors were limited in what they would tell me. This is because of something I may blog about later called "Clinical Practice Guidelines" which are sometimes published to benefit Mega-corporations, not patients. Pharmacies also have 'pharmacy practice managers' which skew their views of what is going to help me (ie. this leads to rotating generic brands instead of keeping to the one brand that works).
When I was 20, I started to have migraines, but I was nearly 31 by the time it was diagnosed.
When I was in my late 20s I started to have visible signs of PCOS. At that time, metformin was not permitted for women like me. It took until I was over 40 to be prescribed metformin for that condition.
For a time I was a cynic about this. But no good comes of that. Now I view all medical events as a negotiation.
The danger to a patient is so great, that any doctor who expects to be worshiped should reconsider. This isn't the doctors fault, but they've played into it, because many are so well trained in "groupthink" it can blind them to the real human in their office that doesn't fit the expected mold. Doctors should be respected, yes absolutely, but discussion should always be open. Doctors are only human and the current trend of speed dating style office visits is leading to more medical mistakes than ever before.
There is also a respect gap. If you tell a doctor you're eating only real foods, rarely go out to eat at a restaurant or avoid packaged and fast foods, will they believe you? If they aren't prepared to believe you on that, how can they ever recommend anything helpful? They will be forever stuck in the mentality that you're being uncooperative and shifty.
It's the same with exercise. When I go to a doctor's office, the first thing they write down is "obese." How many doctors are prepared to believe me that I exercise 5 times a week? Often with weights or calisthenics like squats? But I do, and only for a few months in the depths of my ME/CFS did I stop doing so. And I'm doing it again, now that my fatigue and pain has abated. My weight is still in the upper 200s though. Weight loss and healthy weight maintenance are not the same thing.
In my 30s, I started to have a sharp pain every time I took a breath. It took 6 weeks to rule out pneumonia and the normal causes until multiple Pulmonary Embolisms (mPE) were diagnosed by a lung specialist. By that time, I had 3 infarcts and one of them had abscessed and was causing the pain because the swelling had reached the pleura. I keep missing my appointment with death, thank heaven. I was told it was due to hormones in birth control pills (funny, that wasn't mentioned as a possible outcome when they tell you "may cause clots").
After the mPE event I was unable to take birth control, which was protecting me from my gynecological problems. Having had several surgeries already, I oped out of Mirena, plus there was still a chance of bleeding and I'd had enough of that. I took Lupron for several years until I moved to another state and suddenly nobody local wanted to provide me with the one drug that was keeping me functional. This situation is not yet resolved.
Back to the present: When I was in my late 30s a few years ago, I started to have debilitating fatigue to the point where I rarely left the house and working was impossible. I was in my early 40s by the time I started Valtrex for recurrent Epstein-Barr Virus (EBV). Some "Clinical Practice Guidelines" still recommend against treating EBV in this way, although it has had an extremely positive effect on me and many others including several celebrities.
It took another couple of years to discover I had Non-Celiac Gluten Sensitivity, and to finally find out why normal thyroid drugs did not work for me. Only pure active T3 (which is made in the gut, not in the thyroid) actually helps me. This complex of illnesses each contributed to my debility, and very nearly caused me to seek permanent disability.
I'd much rather have my life back, wouldn't you?For me the situation is still evolving. I can now cook and do housework, I can exercise again, I can do light work. But there are millions of women on a health journey of their own, facing the same dismissive attitudes toward their own illnesses, and the same online trolls when they try to find alternative help. If you find yourself in such a situation, this article is for you.
To get your life back, you will need courage. You will need to be comfortable negotiating for what you want. You can express yourself as you do that. Sometimes, you might express yourself to help others, or to explain to a doctor what is going wrong. But maintain your grace. Don't express yourself just to gain sympathy or approval. That is too much compromise and can lead to you censoring yourself when the truth needs to be told.
Some doctors, family members and websites are not worth the trouble. Discover what helps you and maintain that relationship. Don't be too quick to dismiss. People may be shocked by what you're telling them. Give them a few chances, but accept that some relationships are not helpful.
Give yourself the highest benefit of the doubt, while maintaining the open mindedness that you could be wrong too. Anyone can be wrong. Everything is worth re-examination if it's not yet resolved. Facing that possibility is the best way to gain courage. That is the bedrock from where you can stand tall and reach for better health.
If you like stories of courage, this one is one of the most inspirational Celiac stories I've ever seen: http://caseythecollegeceliac.blogspot.com/2017/06/i-have-celiac-disease-gluten-free-diet-not-enough.html I cheered, I shuddered, I truly enjoyed it. What a brave person! (This is an opinion, not an endorsement.)