Many of y’all have emailed or messaged me to ask how my little sister Betsy is doing lately. I’ve continued to be incredibly touched by & grateful for your prayers, kind words and good advice ever since Betsy fell so ill last April. However, I wanted to wait to share the latest update on her condition until she finished up at the Mayo Clinic, where she just spent 8 days being poked and prodded from every angle.
Now that she’s just home from her time in Minnesota, we finally have an explanation for what it is that’s left her so disabled and in terrible pain for the past 10 months; Mayo Clinic physicians have now conclusively diagnosed Betsy with Fibromyalgia.
In the first month or two after Betsy became sick last spring, she was diagnosed with something called Transverse Myelitis (TM). However, after that diagnosis, we learned to our dismay there is no local doctor who seems to know much about helping TM patients manage the condition once they’ve been diagnosed. Plus, Betsy just kept getting worse, despite faithfully taking the meds she was being prescribed at that time.
She was feeling desperate. She had many questions but no one to answer them. There seemed to be no path forward. Then, late last summer, an old friend of ours was able to get Betsy referred in to see a renowned neurologist at Vanderbilt in Nashville who actually specializes in TM. Betsy’s hopes in going to see him were for a second opinion on her diagnosis, and also for more information on what treatments or strategies might help her. To everyone’s great surprise, this Vandy doctor told her pretty quickly that he didn’t believe she has or had TM, and he also freely admitted that he was frankly baffled by her symptoms and test results. So he decided to run a whole bunch of new tests, including some very relatively obscure ones like checking for paraneoplastic syndrome. However neither that test nor any of the others gave him any better insight into Betsy’s sudden onset (April 2012) severe pain, muscle spasms, neuralgia, cognitive decline and fatigue, so he decided to refer her right away to the Mayo Clinic, where the docs there could review all her records from the beginning, and also examine her starting from scratch, with no preconceived opinions.
So two weeks ago, thanks to the persistence of the specialist at Vandy who was determined that someone would figure out what was wrong with Betsy even if he could not, my little sister and my mother left for 8 days in Rochester, Minnesota. Once she arrived at Mayo, Betsy was checked out in every possible way, and also, once again, all her medical records and testing results – now nearly a year’s worth – were reviewed. And after all of that, the multifisciplinary team at Mayo provided what they really feel is the right diagnosis: Fibromyalgia.
I knew almost nothing about Fibromyalgia before Betsy was diagnosed. Neither did the rest of our family. I had read about it, but only in a general way. Now, of course, we are all educating ourselves as quickly as we can. We have a lot to learn.
Getting this new, rather unexpected diagnosis after all these months was a shock for Betsy, and for us. Obviously, we all hoped that whatever Mayo determined to be the problem would ultimately be curable, while our deepest fear was that they would tell us that she had a progressive, wasting illness like Multiple Sclerosis or Lou Gehrig’s Disease – something that would eventually leave her fully wheelchair-bound before an early death.
However, Fibromyalgia isn’t either of those things. It’s a chronic, disabling syndrome (it isn’t called a disease because of the still-unknown etiology) for which there is no cure, yet. Until there is a cure, my little sister will live with “Fibro” every day of her life from now on, and she will have to learn how to best manage the symptoms. On the other hand, as radically and negatively as this illness has already altered Betsy’s life, its progression isn’t typically one that will end her life. She will live with Fibro. That’s a concept that’s hard for her and for those of us who love her to wrap our head around. We are still processing what this means.
So that’s the latest update: my little sister has Fibromyalgia. Pretty much overnight 10 months ago, she went from an active, healthy mom of three kids, ages4, 9 and 13 (at that time) to a very, very sick person with major limitations on what she’s able to do every day. She’s in chronic pain and her brain doesn’t work exactly right. She can’t sleep and sometimes she can’t walk. And at the moment, I think she’s still in some shock with this new diagnosis, and its implications.
Because there is no cure for Fibro at this time, effective treatment is focused on managing symptoms in ways that work best for each patient’s body. Bets is lucky that there is a local rheumatologist she will be able to see who is highly regarded for her successful management of Fibro patients’ treatment. But a whole lot of the motivation and responsibility for the trial and error process for developing a management strategy that works will be entirely up to Betsy herself. There’s no pill or surgery or transfusion that can do the heavy lifting for Fibro patients. That’s a tough fact to accept when you feel so physically awful and foggy in the head that it’s hard to even manage taking a shower every morning, much less plan and execute a radical lifestyle overhaul with no guarantee that any of it will even help.
My own challenge right now is to avoid bombarding Betsy with advice, information and ideas. I want to text her every blog post I find in which a Fibro patient explains how a certain diet change or medication or supplement made a big difference for her. But Betsy’s not there yet. I am a fixer my nature; I want to make things right for everyone around me – especially my family. But I can’t fix this. I really can’t. So I am trying hard right now to be more of a listener than a fixer. (I’ll let you know how that goes!)
The last three years have just slammed into our previously pretty healthy and whole family like a Mack truck. I have absolutely no doubt whatsoever that for my little sister, the grief and traumatic stress of losing Henry, to whom she was very close, and also the burden of helping to keep me from spinning completely off the rails in that first year after he died, were both part of the complex triggering mechanism for this physical illness.That’s hard for me to think about, but I know it’s true.
However, there’s no way to change what has happened. The only way through is through. Our whole family simply has no choice but to deal with what we’ve been dealt in this perfect storm of loss and illness, and to keep trying to figure out how to move forward with all the joy, grace and integrity that we can muster.
Thank you again SO much to all of you who have reached out to me and to Betsy with prayers, information, love and support since she fell ill last spring. Your kindness and support have meant and still mean more to our family than I’m able to explain in words.