"I Hope You Never..."

I would never have known the name Yolanda Foster were it not for her Lyme Disease. For the uninitiated (people like me who never watch The Real Housewives of Beverly Hills), she is one of the Housewives, and she’s been waging a very public battle to regain her health. 

On a recent episode, the other housewives were seen gossiping about Yolanda. They were wondering if her illness could be fictitious, perhaps an example of Munchausen Syndrome, or simply a bid for attention. It’s a story that resonates all too well with many Lyme patients. People either can’t get their minds around the scope and complexity of the illness, or they don’t want to believe it can be real because then THEY might possibly get sick too, or they inexplicably find it easier to believe that someone they care about is making everything up rather than give credit to their very real experiences. 

Many doctors fall into this category too, either laughing at their patients with, “Who told you that you have Lyme, ha ha ha?” or “We don’t have Lyme in ____ (fill in location here).” I’ve seen patients go into intense self doubt, romantic relationships fail, and people become completely estranged from their families over a Lyme diagnosis. I’ve seen lifelong friendships fall apart. We all have. It’s so strange, when we all know that if it was cancer, or HIV, or some other widely-accepted disease, the reaction would likely be to rally around the patient to give support.

The phrase that often comes out of our mouths is, “I hope you never have to go through what I’m going through,” or something to that effect. This is the right thing to say, the “higher self” version of a plea for understanding and support that’s gone unanswered.

And this made me wonder.

Is that statement EVER sincere, when uttered by a person with chronic illness trying to explain themselves to an unsympathetic, head-up-their-ass friend, relative or doctor? Can any of us really be that evolved? Because when I watched those gossipy women talk about Yolanda, all I really wanted to say was, “I hope one day you get your perfect little bubble burst, so you can understand what this is like for someone like her.” 

I'd like to see how these Housewives cope with what it means to have their integrity questioned as they suffer with as much grace as possible on national TV. My respect for Yolanda skyrockets as I see how generously she deals with these snipers.

I can easily and sincerely wish my supportive friends and family a lifetime without Lyme, because I see the compassion and the understanding, and I would never wish them ill. But it’s those “other” people I’m talking about. 

Because, if I’m honest with myself, my fondest wish for those who simply won’t “get it” is that they finally do. And since scholarly articles, lab results, personal experiences, videos, shared doctor visits, and multiple viewings of “Under Our Skin” have failed to do the trick – what’s left besides having that person walk a mile in our shoes?

Our higher selves, of course, recoil at the idea of wishing ill on anyone, or – God forbid – admitting it if we do. Knowing what we go through every day, how could we possibly wish it on anyone else, especially someone we love and who is supposed to love us? What kind of horrible person would do a thing like that?

Well, I guess I’m that horrible person.

That doesn’t mean I’d wish a lifetime of chronic illness on a person, but certainly a taste wouldn’t hurt. Just enough to trigger some badly needed compassion on the part of those who only seem capable of learning from personal experience. 

I realize that saying, “I hope you never…” has the effect of making us feel good about ourselves, looking selfless while we suffer – wishing everyone else well, all the while still trying to get across the point that this is one of the worst things that could happen to a person. 

There are lots of other instances of such statements, where people say one thing and mean another. I hear people say, “I’ll pray for you,” when it’s clear the meaning is, “You’re screwed, and you probably deserve it.” Or, “Bless your heart” when it’s really, “I’m so shocked I can’t believe what I’m hearing!” So perhaps we Lymies deserve a saying of our own, and maybe this is it.

Or maybe we need to be more honest than your average bear. Perhaps we would plant a more productive seed if we said something like, "One day, I hope you understand this better than you do now.” 

What I know about myself, and all the people I know who have Lyme, is that we’re not horrible people, even if we do honestly wish that those clueless "others" could experience just a bit of what we deal with. Because in the end, if those people who couldn’t show compassion to us were to actually get sick with Lyme, we’d be the first ones extending a hand to try and help. 

Because as much as we want the understanding, we also want our experiences to count for something. So that being chronically ill is not just a huge pile of meaningless crap.

And the best way to make that happen is show our higher selves to those whose curtain of ignorance has finally been lifted. And hope that someday, they too will pay it forward.

On Being Dorothy

In the last few days I’ve been noticing an internal resonance with the story of The Wizard of Oz, and particularly with Dorothy’s character. 

I realize that in the actual story, the Wizard isn’t really a wizard and is in fact a sham. I get that Dorothy had the power to grant her own wishes all along. None of that matters. 

What I resonate with is the HOPE.

Because when Dorothy first set foot on the Yellow Brick Road, she had nothing to go on but hope. And in about ten days I’m going to be embarking on my own Yellow Brick Road, taking a journey to a clinic in a foreign land where there are no guarantees. While my main purpose is to accompany my daughter so that she can have her wishes come true, I have a small hope in my heart that the Wizard may have something up his sleeve for me, too. 

My daughter has been dealing with a Lyme Disease diagnosis since 2010, when she was a sophomore in college. Mine came two years later in 2012, after twenty years of not knowing what was causing my supposed rheumatoid arthritis, fibromyalgia, and multiple other health problems. My son and other daughter were diagnosed later on. So we have four out of the five of us in our family with Lyme. This makes life difficult for everyone, and it’s not made any easier by the fact that what works for one of us doesn’t seem to be the answer for another. 

It would be easy to see this situation as a curse, but I’ve recently gotten in touch with the blessing, too.

Really? A blessing? 

Well, the truth is that I’ve gotten my own symptoms under enough control to live what I consider to be a very full life. I’m able to work, to give back, to travel, to enjoy my friends and family, and to go on fulfilling vacations. When it comes to the work that I put my heart into, I am living my passion and I know I make a difference. My main symptom at this point is pain, and I’ve learned to deal with that. So I would not go out of my way to seek additional treatment, since I’m already managing quite well. But because I have three kids with Lyme who have their whole lives ahead of them, and because I like to go support my kids when they get treatment (if they want me there), I’ve had the opportunity to accompany them and – while I’m there – try things for myself that I would never have tried otherwise. 

So in the summer of 2014, I went on a five week journey with my youngest daughter to Nevada (for ozone therapy) and to Idaho (for biomagnetic therapy), and I got treated too. This winter I’ll be traveling to Tbilisi, Republic of Georgia, to help my older daughter as she gets phage therapy for her antibiotic-resistant acne. She was told that they will test her for everything else she might have going on, and treat whatever they find, so she’s hoping to get treatment for other symptoms and conditions as well. 

I realize it’s a long shot, but while I’m there with her, I’m hoping they can figure out what bacteria could be keeping me in chronic pain, and that they have whatever it takes to get me well.

This clinic claims not to treat Lyme disease, but I’ve learned that this may be more of a cover-your-ass kind on disclaimer than the real truth. Certainly the woman I spoke to who went there for MRSA ten years ago (and who also had Lyme) returned in perfect heath and hasn’t had a relapse of her Lyme in all these years. And they do claim to treat some of the common Lyme coinfections, some of which I know I have. These can be worse than the Lyme itself, so although it’s a crap shoot, I have hope there will be something here for me too.  

I’m keeping my expectations as low as possible for myself, knowing that this trip is a very iffy proposition. The only thing I’m daring to expect is some quality time with my daughter, and a good outcome for her health issues. 

But maybe, just maybe, I’ll be further rewarded for taking this trip, other than my satisfaction as a mom.  Like Dorothy, I’m daring to hope that when it’s my turn to stand before the Wizard, there will indeed be magic.

Transition....Transition!!!

Imagine Tevya, the Fiddler on the Roof, standing on his rooftop, but instead of singing: “Tradition… Tradition!” the words are, “Transition… TRANSITION!!!”  Call it a mantra, a touchstone, a motto… whatever. This has been my reality for the past year or so, as we’ve prepared for a major shift in our family.

After months of preparation, and more than a couple of years of thinking about it, we have finally moved my parents, ages 86 and 83, into a seniors apartment complex. Their new home is one-third the size of their former one.

This has turned out to be harder than we realized, and has taken much, much longer than we planned. As we continue down the path of this process, I long for the joy and groundedness that I hear in Tevya’s rendition of that iconic song.

It’s been a journey of flexibility and patience. My husband and I never anticipated how much work it would take to clear out my parents’ house after they had left it. Downsizing significantly like they did involves leaving behind many mementos, curios, family albums, treasures – and also a lot of junk. It was up to us to work with them to complete the process, all the while being respectful of their boundaries and their lack of stamina. This was further complicated by the next step of the plan (still ahead), which involves us selling our house and moving into theirs.

I won’t lie. We bumped with my parents, big time. We had lots of things on our schedule, and our own finely-tuned timeline for moving, and we were naive enough to believe that any of that mattered in the long run. In reality, all of our plans fell by the wayside months ago when we realized we were not going to be able to do ANYTHING about our end of the move until my parents had fully vacated their house. And the bottom line is that there’s really nothing one can say when a beloved parent throws up her hands, in the middle of a very productive purging session, and says, “I’m sorry, but I just can’t do any more today.” And when that exhaustion leads to several days or even a week off for them to regroup before continuing, the progress can be agonizingly slow.

Learning to check my own impatience and selfish desires at the door has been eye-opening. It’s been a trying time, and also a sweet one. I haven’t forgotten for a moment what a gift it is to have my parents around for this journey. So many people end up doing this as a final step, after their parents are gone. In our case,  we’ve had the privilege of hearing the stories associated with their treasures – the mementos from their abundant travels, and the many items that had been passed down from prior generations. Family albums, autographed books, a personal inscription to my grandparents from Golda Meir… there’s legacy there, and memories, and I feel the sacred responsibility of being the keeper of all of it.

At the same time, we’re letting go of so many treasures that nobody wants anymore, but that have been in our family for generations. Like the plates my grandmother served gefilte fish on, and the wine goblets that we used at our family Passover seders around their big dining room table in Washington, DC. I felt a combination of joy and guilt as we hauled box after box off to consignment. I know that it serves no one to keep things that we won’t use, but deep down I feel like I shouldn’t part with any of it.

I take some comfort in the camaraderie I feel with others who are going through the same thing. When I talk about this with friends, so many of them have either just transitioned their own parents, or are preparing to do so. And I feel blessed and sad when I hear of a friend who’s had to do this same job after their parents were already gone. I recognize and appreciate that however trying, this has been a joint effort of love, and not part of the grieving process.

I’ve  learned a lot about Patience. And Gratitude. And Respect. And I’ve done my best to be gentle with myself as we all embrace this change – scheduling a massage or a pedicure here and there, or just giving myself fifteen minutes to read a few pages of a novel. The future I envision is bright. When this process is complete, my parents will be happily ensconced in their new place, and we will be living ten minutes away from them. My dad will come over to watch football, and I’ll be able to include my mom in mahjongg games, or pop over for lunch at their place. We’ll all enjoy a lot of family dinners together.

Meanwhile, as we renovate their old home and turn it into our new one, as we pack up our own belongings and declutter, it feeds my soul to picture myself on that rooftop – singing.

The AFGO and the AFME

I learned an acronym many years ago that has served me well in life.

AFGO.

It stands for Another Fucking Growth Opportunity.

Before I knew this phrase, there was a lot more teeth-gnashing and nail-biting over life's many challenges. I would bemoan the misfortunes that befell me and wonder, "Why me?" I'd swear a lot. Not that the F word in this phrase isn't swearing, but it's different somehow – more humorous and less angry than the curses that would come out sideways when I was getting upset over those inevitable low points.

But I get it now. I remember a song from my adolescent years (so this will date me for sure), and the words were, "I beg your pardon, I never promised you a rose garden. Along with the sunshine, there's gotta be a little rain sometime."

Well, no shit, Sherlock.

I do think "a little rain" is kind of an understatement for some of what happens to us along the journey, but overall this is a fair representation of life's ups and downs. What I find is that the concept of the AFGO helps me reframe the things that don't go as I'd planned or hoped, and now I'm always looking for the lesson. You know, that thing that makes the trials worthwhile in the end? The part that makes us wiser? So instead of dwelling on my sad or mad or scared feelings, I can take these events as part of the big picture. I shake my head and remind myself that it's Another Fucking Growth Opportunity! I look for the gold that comes from hardship, and feel grateful for how it forges me and those around me into the best versions of ourselves.

Some of the positives I've noticed are that after a big challenge, we know what's important. We don't freak out at small inconveniences. We have perspective. We know we can handle The Big Stuff when it comes around next time.

One of my big challenges is that there's a lot of chronic illness in my family. It's been a rough ride for us, with periods of calm that tend to culminate in the occasional emergency. And what I realized these past couple of weeks is that I've evolved into someone who doesn't tend to panic or overreact when medical shit happens. A case in point: two weeks ago my husband got his first dose of IV antibiotics for a MRSA (drug resistant staph) infection on his foot. This came after several days of watching his toe and foot turn red and swell up alarmingly. He's still getting IVs and will continue to do so till the end of next week at minimum. He's been on FIVE different antibiotics to date. He needed surgery to remove necrotic tissue, and the whole thing has been scary to say the least.

During this time I was committed to do a presentation and facilitate at  Woman Within Level 2 (Wholeness Training), which involved being away for about a week just as this whole crisis was coming to a head. I was literally on a flight to northern California while my husband, at an extremely acute phase of his infection, was being seen by the head of Infectious Diseases to decide where to go next with his treatment. Yes, he told me to go, and yes, I felt terrible leaving him at such a crucial time – and to be honest, I half expected to have to turn right around and head home as soon as I arrived. But I went. And there was some surprise on the other end when I showed up in spite of this situation. I questioned myself, and wondered why I was able to leave during a crisis that would have grounded many other people. Was I a bad person? Did I not love my husband? Did I not care enough to give up my plans? None of those stuck for me, so I knew it had to be something else.

What I realized is that, in my case, the AFGO has a cousin –  the AFME.

It stands for Another Fucking Medical Emergency.

And it has normalized difficult medical situations for me so that I tend to take them more in stride than those who don't get the "gift" of this kind of crisis very often.

I've found myself in quite a few such situations over the last five years or so, where I had to make a decision about stopping my life in order to attend to the medical crisis of someone in my family. Most often I've dropped what I was doing, but in other cases, I've chosen not to. It's been a matter of weighing everything – looking at how well the person in question can take care of themselves, and who else can help out other than me. I learned to do this after dropping everything last March when one of my daughters had a crisis, canceling a plane ticket to a very important event at great expense, and then finding out later that my husband could have handled it just fine.

What? I'm not indispensable? I'm not the ONLY one who can deal with this? Well, that's humbling.

In fact, with this most recent situation, there was a huge gift in my not being around. Our two daughters took matters into their own hands. One drove home from college, and she, her sister,  and her sister's boyfriend came over, cleaned up the kitchen, and cooked my husband a wonderful meal. Then they hung out and watched Tosh. O on TV together. When I called, full of apprehension as to how my husband might be doing, everyone was laughing and having a good time. In my absence, the girls and their brother took turns getting my husband to his medical appointments for the next few days.

I'm pretty sure if I'd been around, none of this would have happened. The kids would have known I was handling the situation and left it to me. There would have been no void to fill.  By not being there, I created space for others to step up and show their love.

The added bonus is that my husband got the gift of seeing how much his kids care about him and are willing to do for him. How huge is that?

The AFGO and the AFME are my perspective-makers: frames of mind that allow me to step back and see the bigger picture of my own life, with humor, wisdom, and some shaking of my head, but without wallowing in the misfortunes.

And now I'm curious if anyone else out there relates to these, or has another type of AF_ _  (fill in the last two letters) to share. Please do so in the comments!

A Very Different Top Ten List

In my travels since being diagnosed with Lyme Disease, I’ve run into quite a few people who sound like they probably have it, too. Either they’ve been diagnosed with one of the classic Lyme “mistaken diagnosis” illnesses like Rheumatoid Arthritis, Fibromyalgia, Chronic Fatigue, MS, ALS, Parkinson’s, Lupus, Vertigo, Immune Dysfunction, Brain Fog, strange neurological symptoms, or whatever else, or they’ve stumped their doctors time and again with symptoms that no one can figure out. Others have been told (by doctors and loved ones) that it’s all in their head and they need to get a life. Then there are my favorites, the ones who’ve suddenly come down with symptoms of this tick-borne illness after 1) deer hunting and dressing the kill (!!!), 2) working in the garden, 3) hiking, 4) camping, 5) golfing, or 6) picking ticks off themselves.

What I’ve learned is a cliché, but I’ll repeat it anyway. 

Denial is not just a river in Egypt.

So here’s the deal, for those of you who might recognize yourselves or a loved one in the intro above. While it may be true that those of us with Lyme have the potential to see it everywhere, what’s also true is that we are probably bigger experts on this disease than any of the doctors you’re currently seeing. 

And while it may seem presumptuous of us to suggest that you might want to check into this disease for yourself, we don’t bring it up and thus risk your rejection lightly. We say something because we CARE. We’ve been through this and we want to spare you the uncertainty and pain we’ve experienced.

Here’s a Top Ten List of the things I’ve heard when talking to people who I believe might have Lyme, and a bit of commentary from my unapologetic, opinionated self. 

1) “Interesting. I’ll ask my doctor about it.”   Wrong approach. If your doctor knew enough about Lyme to know how to diagnose you, they would already have tested you for it based on your symptoms. So the real question here is, how much time do you want to waste? Because the people I know who went this route have wasted YEARS that they could have been spending getting well. And when they finally got a clue and went to a real Lyme doctor, they’d already thrown away a ton of time and money while spinning their wheels.

2) “Oh, no, it can’t be. I was tested for Lyme and my doctor told me I don’t have it.” This was me, 22 years ago. And here’s what I know now. Unless your doctor is a Lyme Literate MD (LLMD), whatever test they sent you for is probably a bad one. And there are many bad ones, especially the ones the non-Lyme Literate doctors use. In fact, there are really no great, comprehensive tests for Lyme because they all have a pretty high rate of false negatives. Lyme hides out in the body very successfully and can be extremely hard to detect. The best Lyme doctors know to utilize several different tests, and if there’s still a suspicion of Lyme after a negative test result, to dig further for answers.

3) “I need to find a doctor who takes my insurance.” Good luck with that. There are very few qualified LLMD’s who take insurance. I wish I had better news on this front. Don’t expect to stick with your regular doctor. He or she probably doesn’t have a clue about Lyme, and if you DO have it, and you follow their advice, you’re headed for big trouble. They're likely to steer you in the wrong direction and give you drugs that will actually help the Lyme to flourish. I speak from experience, after being given years of immunosuppressive drugs for my "Rheumatoid Arthritis." Don't go there if you don't have to.

4) “I don’t want to find out. I see what you go through and that’s not for me.” Yes, but I’m in the process of getting well, while the suffering you’re doing (which is why I suggested this to you in the first place) will continue without any improvement until you find out what’s really wrong with you. See #1 and “How much time do you want to waste?”

5) “I don’t want to find out until they find a cure. What’s the point?” Right. So don’t treat cancer because there’s no cure yet? Come on. There are lots of things for which there is no cure, but that doesn’t mean you can’t do everything in your power to be as healthy as possible. I was horribly sick for years, misdiagnosed for twenty of them. Finding out that I had Lyme was the best thing that could have happened to me. I have my life back, and I'm loving it. You, too, can have a shot at living better than you are now.

6) “I’m going to go through the system first and see what we find out before I go see a Lyme doctor.” Again, see #1 and “How much time do you want to waste?” I don't know a single Lyme patient who ever did well by "going through the system." Why not cut to the chase and get some real answers? How does it serve you to drag this out?

7) “I don’t want to have to change my diet.” Believe me, I get it. I didn’t either. It’s no fun being the pain-in-the-ass at a restaurant who needs to know what’s in everything. It’s hard to say no to things I used to love. But on the other hand, now that I’ve been living with my new, healthy diet for almost two years I can say that it really wasn’t that hard, and that I wouldn’t go back to eating crap again even if I could. It’s too satisfying to know that most everything I put in my mouth is healthy for me, and that I’m not eating ANY junk at all. It’s also easier than you think to make delicious food that can even satisfy your sweet tooth. I make a killer cinnamon spice latte with organic coffee and no sugar or dairy that even my sugar and dairy eating friends rave about. I can whip up pancakes that everyone loves in five minutes, and they're low carb, sugar-free, gluten-free, and dairy-free. It just takes a little re-education. Really.

8) “My brother/sister/uncle/aunt/mother/father/next-door-neighbor-the-doctor says that Lyme is all a big hoax and I believe him/her.” Great. I have a movie for you to watch. It’s called “Under Our Skin.” Here's the link: http://www.underourskin.com/#home-underourskin . If that doesn’t change your mind, I think I’m done trying to convince you. I only have so much energy and this isn’t how I want to use it. But feel free to come back to me if you ever figure it out, because I’d still love to help.

9) “I think I’ll go see an Infectious Disease specialist. They should know all about this, right?” NOOOOO! They are the absolute worst doctors when it comes to Lyme disease. Please, steer clear. I haven’t heard a single good story from someone who went that route. Save yourself. Lyme Literate MD's have taken the time and spent the energy and money to specialize in this disease, and they've got the latest and greatest information and tools for you. Of course if banging your head against the wall feels good to you, go right ahead and see an ID doctor.

10) “I’ll just sit with it and see what happens.” Okay, as long as you understand that Lyme is a ticking time bomb, waiting for your immune system to crash so it can blossom into its full glory. This happened to me, before I knew I had Lyme. I thought I’d beaten whatever ailed me and was totally well for three years, until I was rear-ended at a red light and got all my symptoms back. And by the way, they’ve found Lyme in Alzheimer’s lesions, so the good news is that if you wait long enough, you probably won’t remember that you could have kept yourself from getting dementia.

It’s still incredible to me how reluctant people who are already suffering are to pursue a diagnosis. Yet it shouldn’t be. I sat on an “inconclusive” Lyme result for years without acting on it, even though my LLMD told me he thought I had Lyme. It was only when a new test came out and gave me a resounding Positive that I finally succumbed to the lifestyle changes and protocols that would make me well. So I do understand. Change is hard. We don’t like it. And the devil we think we know (in my case, Rheumatoid Arthritis and Fibromyalgia) can be a lot easier to contemplate than the one we don’t. 

But here’s the thing. A Lyme diagnosis is not all bad. There's a certain relief in finally finding out that there's a good reason for all those weird symptoms you've been having. And there are actually some beautiful silver linings in having Lyme, a few of which I’ll mention here. (Feel free to add more in the comments.) 

It’s all the wonderful, helpful people I’ve met who also have Lyme, who are valiantly fighting the good fight, and sharing with each other so that they can pay it forward. 

It’s the caring doctors who service this community, knowing they’ve chosen for themselves a very difficult patient population and that they’re bucking the establishment every single day. Many of them risk their careers to do the right thing for us. They're heroes, pure and simple.

It’s the Facebook support community of Lyme patients that is there for us no matter what, where calls for help are answered so compassionately in minutes by people we may never have met in person. 

It’s all the healthy habits I’ve learned that will probably save me from a lot of those other diseases I was headed for with my high sugar, junky diet prior to this diagnosis. 

It’s the appreciation for every good day, and the perspective that allows us to understand what’s really important in life. 

It’s the clarity that comes from learning who one’s true friends are, because those are the ones who support us through thick and thin. 

And the real biggie for me is this: 

It’s when the risk of speaking up pays off and someone actually listens to us, acts on it, and begins the road to recovery. Knowing that we've just spared someone from years of needless suffering is, to me, the greatest gift of all–the gift and the privilege of making a difference.