Friday, January 29, 2016

At what price...

The FDA issues a strong risk advisory against a medicine I've been taking for almost five years. My doctors won't prescribe it anymore and they have no alternate suggestions. Since the medicine helps me digest food that I can't normally process due to gastroparesis, I'm stuck - literally. And I'm scared.

It's easy to understand the physicians' concerns about liability since the medicine can, according to the FDA, cause cardiac issues; however, the drug is available in other developed countries. Are we, in the U.S. to be deprived of this right? Is this "big pharma" running the show? Is it more lucrative for them to have those of us who rely on this drug end up in the hospital and, potentially, dehydrated, at the brink of starvation, and in need of radical surgery?

Here are my options:

1) Stop the medicine cold turkey and wait until I am sufficiently impacted and in enough pain to be admitted for emergency treatment.
2) Find and try supplements (pills, teas, oils, balms) from thousands of "natural" stores or websites that are eager to fill this gap.
3) Risk buying the drug from another country that only accepts e-checks.
4) Begin a purely liquid diet to see if I can manage it myself.

In the past few weeks, I've adopted a rudimentary combination that includes substituting the medicine with an organic supplement pill, edible oil and a custom herbal tea blend. I risked the purchase from New Zealand by supplying them with both my routing and account numbers from a personal checking account where it will take up to three weeks to get the darn, non-FDA approved pills. And, I am gradually switching to an all-liquid diet.  But, I'm angry. I can't eat and I can't poop. If this is TMI, you haven't been reading my blog very long because I share everything to try to help others. 

Lastly, I've also found a supplier of medical marijuana that I am now using for the joint pain from Lupus and my high anxiety that is attributable to constantly performing triage on myself every single day and trying to manage physical and cognitive medical problems WITHOUT all my doctors communicating with one another. It's exhausting. But you know that already.

The price tag so far for all the crap I've bought and tried this past month including my "regular" prescriptions is nearly $1000 and I don't know what, if anything will work. But the toll it takes on me is much, much higher. If another doctor fails to return my phone call, I'll, I'll .... do nothing or go to sleep. I've been a professional patient for 20 years now due to Stage IV Lymphoma and Lupus. Harsh chemotherapy is certainly the gift that keeps on giving!

There's one final possible solution discovered by someone in my online gastroparesis support group that I find hilarious. Eat sugar free Gummy Bears available on If you read the reviews, you will laugh yourself silly. One of my fellow GP sufferers is actually going to try eating them rather than force-drink the gallon of medicinal liquid provided for a colonoscopy that we literally can't stomach.

At least there's a light at the end of the tunnel - pun intended - and it's possible that it will be gummy bears to the rescue!

Sugar Free Gummy Bears from

Tuesday, January 5, 2016

The Hail Mary pass...

I did it. I threw the Hail Mary - that long, forward pass thrown by football quarterbacks close to the end zone as possible while the clock runs out.

I threw it as far as I could; from New York to South Carolina where I've landed on both feet in the end zone and, quite possibly, scored the winning touchdown. A whole lifetime of trauma, illness, tragedy, and top-heavy responsibility led me here and it's been a very, very long journey.

And, I won't know until I know.

Nearly 20 years ago I was asking God to throw the Hail Mary as I succumbed to cancer and Lupus in one tremendous and episodic journey to the other side. He (and thus, I) prevailed to see many other days raising my children, nurturing my marriage, playing with friends and working as a writer. You can read more in my book, DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness.

And now I'm exhausted because I have finally given myself permission to rest, relax and rejuvenate. At 55, I want to just be... And after many years of locale research and extended stays, it is sunny, warm South Carolina that affords me that opportunity. It's where all the hard work and hand-holding my husband and I did for each other, our children, our extended family, and strangers seems satisfied.

Yet I find myself already filling out a volunteer application for nearby Brookgreen Gardens. !!!???

I come from a long line of doers - people who do for others yet neglect themselves. The only thing I've truly neglected is my health and it needs tending; my body tells me so. So since arriving here nearly a week ago and rejoicing in my new home and environment, I am listless and unable to do much but sleep, eat, and watch television. Yet, I am at peace far away from family and friends who I miss. Plus, I am blessed by two sons who are carving their own way in the world. I am here by choice and surrounded by the love, hope and grace that emanates from within me. Yup, simply from me.

What comes next is anyone's guess and I'll wait for it all to arrive. If it's weekly bike riding thanks to an electric-powered bike, walks on the beach or in the warm rain, meals out with my husband, meeting new friends, escaping with the dog and, perhaps, tending a garden even though I've always had a black thumb, I will smile and hum along with whatever tune is playing.

If it's illness yet again, I will face it with dignity and courage and choice; that is, my choice if I want to get treatment or fold into my own harmony and spirit with all the beauty that is around me and the memories that sustain me.

Godspeed in 2016...

Sunday, November 1, 2015

Wheeling and Healing...

Exhilarating! For a couple of hours, I was a child again forgetting that it's been 20 years since I rode a bike, due to cancer, Lupus, and chronic illness. I found that sweet spot that makes you never want to leave. I was flying!

After being 'forbidden' by my husband and children to get a motorcycle or scooter in my new hometown of Murrells Inlet, South Carolina, I stumbled upon a store that rents and sells electric bikes. Pedego of Myrtle Beach. The shop's wonderfully knowledgeable, friendly and patient owner, Aaron, guided me through the process of trial and error as I visited the store a few times and, finally, a 12-mile ride yesterday through Market Commons, Myrtle Beach State Park, and nature trails I didn't know existed.

I was pedaling and I was exercising and I was using the throttle when my legs got tired - zooming up to 20 miles per hour with the wind rushing through my hair and the glee rising in my heart. We six newbies, on rented bikes, became fast friends as we caught up time and again with each other and our two guides. Up and down, across and through we went calling "Hellos" and "Good mornings" to passerby and residents while ringing our little bells to let people know we were coming.

It was joyful. It was exactly what I was looking for - a reconnect to my soul and spirit from before traumatic illness; a pathway to yet another 'new normal' as I regain opportunity to physically do more in a warmer climate and on flatter topography. Those of us with chronic ailments mourn every time we lose an ability or activity we loved. Riding the Pedego electric bike yesterday may have been simply a joy-ride for some but, for me, it was a very long-awaited triumph. And the fact that it will help contain or correct my various diseases and rely less on medication is huge. HUGE!

I can't say enough about the bike and the shop that have literally handed me back a piece of my life that I thought was lost forever. In fact, according to owner, Aaron, most Pedego enthusiasts are those 55 or older who have some sort of medical issue including but not limited to knee, back or joint problems, excess weight, pulmonary restrictions, and, even, depression. This is not just a bike, it's a lifestyle as Pedego owners gather every week in Aaron's shop to talk, share, learn, and ride.

As I laughed and pumped my fist and shouted out "woo hoo" on my ride, I was so pleased to find the bike able and stable on uneven, rocky, sandy or pocked ground. I soared through the ride and, while I am a bit tired today, my joints hurt less and I slept more soundly. I can't wait until next time!

Thursday, October 15, 2015

Chapter IV: Settlement of my Soul

If I try to separate my life into Chapters, I get four:

  1. Birth to Young adult
  2. Work, Marriage and Children
  3. Cancer, Lupus and Chronic Illness
  4. Settlement of my Soul
Astonished as I am that I still live and reach goals I never thought possible, it is this Chapter, number four, that is the most intriguing. It's the latter third of my life. All the things and people and places I grasped at and for the past 55 years has led me to  reconciliation of my soul's desire.

It's unusual yet so very, very gratifying. What did I yearn for as a child besides a pony? What actions or activities made my heart sing? How many life lessons have I learned? Where am I going from here?

Moving from my native New York to a southern state where the air is warmer, cleaner and the ocean is nearby nourishes my soul. Having access to nature and wildlife of all kinds - including alligators - continually surprises me. Squirrels' tails are less bushy here since they don't need the warmth from the extra hair so now they really look like rats with tails. Poinsettia plants grow naturally here, a discovery I made by accident as a green plant slowly turned red last winter and I had an "aha" moment. The bark of the many different types of palm trees reminds me of the hardness or softness of people. The storms are just part of the day. 

I have time to explore, gaze, or reason. I get to think uninterrupted. I have found my "final resting place,"  a phrase that disturbs some of my friends and family. After all the hub-bub of a very rich yet difficult life, I get to ask myself: "What did I enjoy doing most when I had the time to do it?" The answers are coming to me slowly but surely and I will do everything in my power to honor my soul's desire. 

While it sounds trite, it is my life and I am blessed to be able to live it regardless of the physical encumbrances I bear and the emotional scars from the tragedies I've endured. You've been reading my "book" for awhile now. Everything stems from my soul and each day gives me another opportunity to give it its due.