(Author’s note: This article was originally published in 2016.)
Throughout my life I was the healthiest, most physically fit person I knew. In high school I was the cheerleader who could out-run, out-do almost anyone, and it was the same in college and my early actress years in California–always working, always very physically active. Other than the usual colds and flu, I was rarely sick with the exception of a bout of pneumonia, the result of trying to learn how to smoke Clove cigarettes, unfiltered. Less than a pack later, I was in the hospital. Moral of that story: smoking is NOT as cool as it looks… In the late 1990’s I worked at 20th Century Fox Studios and after working 8-10 hours I sometimes co-taught an advanced aerobics class on the lot. I don’t drink, smoke (see above), don’t do any drugs, and other than one cup of coffee in the morning I only drink water throughout the day. No sodas, no aspartame. Healthy as can be.
But all that changed when I suddenly began having a series of health problems around 1999. It started with my vision, then major stomach problems, then muscle and joint pain that I’d never experienced before. Soon after, everything snowballed into an all-out assault on my body. It got to the point where I couldn’t sit up straight in a desk chair and could barely hold my head up, much less exercise anymore. Someone suggested I see a rheumatologist so after a barrage of doctor’s appointments and testing (including trips to Scripps’s in San Diego where world-renowned disease specialists ruled out Lyme disease) I was ultimately diagnosed with Fibromyalgia and Ulcerative Colitis.
For almost a decade I obediently took all the pain and sleeping meds prescribed to me, but nothing helped. I still hurt and rarely slept. The most difficult part for me was not being physically able to work anymore, so to stay busy (and stave off depression) I did charity work for the LA Children’s Hospital and worked part-time as a Children’s Director at a church. In 2009 I began my political work, writing for various websites from home and doing on-camera interviews from political events, all which ultimately morphed into PolitiChicks. Around the same time I stopped taking all the prescription medicines my Rheumatologist had prescribed; they weren’t helping anyway and mostly made me groggy. So I took lots of Extra Strength Tylenol; very rough on colitis but it was a choice I felt I had to make in order to remain active.
Other than a few recent Facebook posts I’ve never publicly discussed my health issues so it’s always funny when I’m asked how I have so much energy to do what I do, going all over the U.S. to speak at events. The reality is that after those events I’m usually in bed wrapped in heating pads, sometimes for a week or more. Only one dear friend, my former PolitiChicks producer Beverly Zaslow, could always tell when I’d “hit my wall” and needed to rest during those events. Bev has diabetes and says she can always ‘see it in my eyes’ when I’ve had enough.
Despite my joint and muscular pain, everything was manageable–until this past January.
I had just finished speaking at the 2016 South Carolina Tea Party Coalition Convention and was on my way home to California. As always after a big event, I was tired but nothing out of the ordinary. Then, while changing planes in North Carolina, my vision went out. It was as if a thick veil of fog suddenly covered my eyes, just enough that I could still see but bad enough that I knew something was terribly wrong. I sat down a few minutes until the “fog” lifted but after that none of my eyeglasses worked anymore–not the bifocals I had recently gotten, nor my reading glasses. I’d been tested for cataracts just a few months earlier so I knew it wasn’t that.
Once home I mentioned the incident but brushed it off as just being overly tired. I bought several different pairs of reading glasses in various strengths; none of them worked.
Then an avalanche of strange symptoms began. It was as if my body was being attacked, beginning with a numb, ‘tingling’ sensation in my left hand and forearm. It felt like my hand and arm were trying to fall asleep but couldn’t quite make it–but it was constant, never went away. I also had bladder problems for the first time in my life, and my usual “fibromyalgia” pain was now almost unbearable. All of it was like nothing I had experienced before.
Interestingly most of the more serious symptoms occurred last month (April 2016) during the 5K MS Walkathon at the Rose Bowl in Pasadena. This was the second MS Walkathon my family and I had participated in. Our first was in 1996 when Jason was 10 years old—but this time we were walking because in 2015 Jason, now 31, was diagnosed with MS.
While walking that day I became extremely dizzy, as if someone had spun me around in circles. I was staggering and unsteady so I had to hang on to Mark’s arm for balance. Next came an intense migraine that seemed to be spreading into my eyes. I told Jason about this and all the symptoms I’d been experiencing the last month or so, convinced I might have early onset Alzheimers or maybe a stroke.
Jason said, “Mom, I hate to say this but it sounds like you have MS.” He suggested I see a neurologist.
Long story short, after a barrage of doctor’s appointments, multiple MRIs, a 3-day hospital stay with IV steroids, and a spinal tap, I heard the same words the doctors had told my son the year before–things like “lesions” and “elevated white blood cells” and “optic neuritis”. And ultimately my diagnosis was the same as my son’s: Multiple Sclerosis.
Each day the past few months I’m never sure what will happen next, or which new symptoms will pop up. Some days it’s dizziness/vertigo, which leads to balance issues and trouble walking. Sometimes I have difficulty talking because my throat muscles tighten up, constrict. I have cognitive problems, forget what I’m doing or where I’m going. The numbness that was only in my left hand has now spread all over the place at different times, sometimes causing a maddening burning/itching feeling that is only relieved by putting cold towels all over me.
Other symptoms are flat-out frustrating. A few days ago during a manicure I was asked to relax my hand but when I tried to un-stiffen my fingers, I realized I couldn’t. I stared at that hand, trying (but failing) to “will” those fingers to relax, to move. I remember trying to be strong when Jason first told me the same type thing had happened to him, which summarizes the most difficult part of all of this–experiencing firsthand the same type of pain and suffering my son has been going through the past year.
Had I been diagnosed correctly over a decade ago, would I be in less pain, have less extreme symptoms and damage to my spinal cord now? I’ve since learned that if I had initially gone to a Neurologist instead of Rheumatologists I may have had a “fairer fight”. But eh, that’s neither here nor there and not something I can dwell on. You can’t go backwards. Now I know, and now I can deal with it correctly.
So here I am today, learning how to live in this “new normal”. My son has had huge success with Dr. Terry Wahls’ diet book, Wahls Protocol, so since the day I got out of the hospital I’ve been drinking tons of cold-pressed green juices loaded with kale, spinach, beets,and ZERO sugar, and I’m eating more fish and root vegetables than ever before. I’m also giving up dairy and am now drinking almond milk, something my friend AlfonZo Rachel has been trying to push on me for many years (thanks Zo, and yes, you were right, it’s a great alternative!). I’m also currently using a cane to walk, mainly for balance issues, and have resigned to the fact that I may never see as clearly as I did before–but at least I can still see, and that’s all that counts.
And since Multiple Sclerosis is officially a family thing, I’m going to do what I’ve done all my life and I’ll fight to bring awareness to this disease and hopefully help find a cure. May 25 is World MS Day so I hope you’ll visit the National MS Society website HERE for more information about this disease and what you can do to help fight it, too.
I’ve also got to fight to stay out of a wheelchair and I’ll do that by following Jason’s dietary lead and my doctors’ orders. Thankfully there have been major advances in MS research over the years and the meds my son is taking (I start mine next week) should keep more brain and spinal cord lesions from forming.
Meanwhile, next month my son is getting married to the most wonderful young lady in the world. She has already experienced the “in sickness and health” part of marriage and they understand the road ahead of them. They are blessed.
As far as my political career goes, these days I’ve been forced to take it easy. I’ve turned down numerous television and radio interviews because of vocal or cognitive problems, or flat-out pain. I’m continuing to fulfill speaking obligations but am trying to pace myself, and not to allow the stress of politics affect me. (Not an easy feat…)
All in all, life is good. I continue to be blessed beyond all reason. My family’s story remains a good one, and with God’s grace is to happily be continued.