The Trust Fund Disease


As many Americans head towards retirement, and the sandwich generation are taking care of kids, as well as their parents, we learn more about Trusts in all forms.  Estate trusts leave yearly income to relatives lucky enough to inherit it.  There are some things in life that are necessary, costly and expensive but they shouldn’t require a trust fund to pay for them.  Of what am I speaking?

March is Endometriosis awareness month.  1 in 10 women, or 10% have endo and about $10 million in research is done each year, 10% of the population has diabetes and $10 Billion is set aside for that research every year. Of course, diabetes affects men as well as women. There’s the rub.  As a woman who has had endometriosis since I was 17 I’ve gone through 30 something doctors specifically for this disease.  I’ve traveled over states, and hundreds of miles to find the right answer, the right treatment, the right understanding.  There is no cure. There are many treatments, but one in particular is shrouded in false information from its maker and can cause several nasty side effects although many gynos push it as they get paid from the maker to do so – Lupron. Good skilled surgeons, doctors who know how to treat this disease are few, and far between.

The so called “specialists” who treat the disease with excision surgery are a handlful in this country. There are several in New York City but most do not take health insurance. The costs for such a surgery average $20K and up.  There are many women who pay of pocket for such surgeries.  It’s normal with this disease to have several surgeries over the course of your lifetime.  Sometimes you can get your insurer to cover out of network costs but it’s appeal and lots of work to get there.  Nothing is certain but in network care most of the time. Private practice practitioners who will work out of a few different hospitals say that this is the case  because they take longer in surgery, do more, than those who do take health insurance and most insurers will not cover that.  Sadly, no doctor is perfect and those private docs make mistakes from time to time, and repeat surgeries become necessary.  That’s right – you pay out of pocket yet again.  No problem for the trust funders, but a problem for everyone else.  When you find the rare specialist who does take insurance and is known for excision as well as robotic surgery, which is now the preferred surgery method,  there are still out of pocket expenses.  Insurance doesn’t cover every medical charge, co-insurance can be as high as 25% so even after coverage, the patient is left with a five figure bill to pay on top of monthly premiums and deductibles.  This has got to change. Women’s health has long been the long lost cousin of medical research dollars.

If endometriosis were somehow a man’s disease, there would be 100 men on the floor of Congress waving bills for research funding to find a cure.  I find myself facing another, 6th, surgery at the end of this month, one I expect to be my last!  Doubling over randomly in the past year due to sudden groin pain while walking, standing, sitting and sometimes even at doctor appointments has led me to this decision.  Women’s health deserves as much attention as men’s health.  Spread the awareness.

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Every Step I Take…

(Hiking the Akinase Ridge in the Mohave Desert in Utah, I huffed and puffed as I climbed 1200 feet up into the ridge but Nothing happened to my knees or joints. Oh, yeah, I did get some big blisters.  Blah!)01a3f2a534a25b7925ea667eb0b3c3ef31dfe113fc

August 30, 2016 I went to the ocean to enjoy the last weekend of August at one of the best beaches I know.  I’ve done it dozens and dozens and dozens of times over my life.  I’ve cut my feet on shells, razor clams and the like to no big concern.  This time while exiting the rough water, there were five feet waves and rip tides due to the Tropical Storm down south, I was feeling hesitant.  No one really swims at the ocean, you body surf or bob up and down in the waves just off shore.  I’ve walked, jogged and ran over sand many times over my life with no consequence.  This time however, I was left stupefied by the Popping sound heard coming from my left knee.  Was that my knee I said out loud?  What was that?  Like a champagne cork but no bubbly to be seen.  I stood staring at my knee and turned left just to get walloped by an incoming wave.  That wave knocked me over!


A woman nearby came running over to me and asked if I was okay?  No, I said.  I heard my knee pop and was afraid to move.  Her daughter was bobbing up and down in the waves happily and carefree. She said ice it when I get home. I did get out of the water and another beach goer said to me, “I saw what happened are you okay?”  No, I heard my left knee pop but I can walk on it and there’s no pain.  “Use ice a lot,” said the stranger.  It felt weird but I could walk on it.  Took all my beach gear and went back across the wide sand to my car.  No, happy hour and last band of the summer for me!

The next day my knee was blown up swollen and couldn’t walk on it or bend it.  Ugh!! What followed was even worse. I couldn’t find a doctor, Orthopedist who took my New York Health Market insurance plan.  Or, the doctor did but was on vacation or booked.  I ended up at the ER the next day.  With an x-ray it confirmed moderate swelling.Really?  I had no bones broken and the ER doctor pulled my calf and bent my leg and pulled on it.  He thought my ligaments were strong. However, I told him of the Wiggly feeling I had and screamed when I felt my knee going sideways.  I left with gifts!  Crutches and the Immobilizer!  So, I left in a wheelchair with crutches and a brace that will  not let my knee bend!knee-sprain

Hence immobilizer.  They said the POP was most likely a Meniscus tear and several internet searches yielded the same conclusion.  Just got an MRI today and I have a visit with Orthopedist this Friday so will find out the results then. Until then, every step I take, is planned, short and careful.  Do you know how many steps it is back and forth in your bedroom to get ready in the morning for the day?  Seriously, more than I ever gave a thought to.