Friday, January 20, 2017
The journey of chronic illness is a lot like the long, lonely drives I’ve taken lately on my way to find answers to my health questions. The drive, and my spirit, were windy, rainy, gray. Alone in my van, and alone in my struggle for health. Sometimes finding healing is a very long journey.
For more than a decade, I’ve been trying to figure out what’s wrong with me, and I’ve been doing it on my own because despite having seen SIXTEEN doctors in thirteen years, no one could figure out what is wrong with my body. Much as the wind on these drives tried to shimmy my van into another lane, there have been many forces during the past years that have attempted to steer me the wrong way. Distractions. Doctors who had wrong information. People who think I can’t possibly be as sick as I say I feel, because I look fine. People who think I should give up the quest to find my health, because if all those doctors say I’m healthy, I must be. People who say I should be happy with what I’ve got and how I feel.
As I drove to these appointments over the past month, my windshield wipers were on high, frantically swiped the rain and sleet from my vision so that I could try to make sense of where I was going. And honestly, I knew the direction I needed to head -both on these rainy real-life journeys and in my metaphoric journey- but I didn’t know exactly where my road would take me, or which exit to get off on. All I knew was that I needed to be in this van, driving down this road, and stopping at a rest area wasn’t an option. Getting distracted or calling off the journey were not options. I’ve been fighting for my health, my happiness, my life. I’ve had to make many detours, but now, after these last two long drives, I think I’ve found the right destination.
I’ve been getting more and more sick over the past decade. It’s been subtle. So subtle that I’ve forgotten what it feels like to be healthy. Chronic illness has become my new normal. Looking back, I can see when my health took a definite turn for the worse all those years ago. But doctor after doctor couldn’t explain my symptoms, and most of them brushed off my concerns as just being too stressed out because I have four kids with special needs. I’ve had a couple of rounds of physical therapy to address inflammation that no one could really understand. I’ve had a couple of cancer scares. I’ve had a bone marrow biopsy. I’ve spit into countless test tubes. I’ve had so much blood drawn, I could have probably given transfusions to an army. I’ve accumulated some crazy diagnoses. I’ve had treatments for some of those crazy diagnoses. But I still feel horrible and no one could explain why. My (PREVIOUS) frustrated general practitioner kept prescribing medications to mask the symptoms I complained of, year after year. She touted the benefits of sleep, stress reduction, drinking enough water. Duh. I know all that, and although it’s been impossible at times to take care of myself the way I should because of my life with my beautiful children, I knew there was something else lying underneath - something that was the real cause of my illness.
So, being the ever-curious crazy person that I am, I just kept digging. And digging. And digging. I can’t even begin to tell you the things I’ve looked into and researched and pursued over the years. I felt that if I could figure out what was happening to my body, I would have a hint as to what is happening to my children’s bodies to make them suffer so much with tics, anxiety, insomnia, brain fog, neurological disabilities. I attacked this journey with the tenacity and ferocity that only a mama can when she’s desperately trying to improve her life, as well as save her children from following in the same path of chronic illness. I refuse to let my children spend decades of their lives feeling like crap with no explanation why. If I can do anything to help them solve the mystery of their underlying health issues, it’s my duty to pursue that.
Chronic illness certainly is a lonely journey. Especially when you look fine. People get tired of hearing about your ailments. I get tired of FEELING my ailments. Some people wonder if you really have all the symptoms you say you have, or if you’re just looking for attention. After all, how could someone who looks perfectly healthy really have ALL those things wrong with her? I just have to say, never in a million years would I wish chronic illness on even my worst enemy. (Of which I have none. Unless someone out there secretly loathes me. If you do hate me, keep it a secret, because I can’t take any more negative crap right now.) Sadly, my entire family struggles with invisible disabilities. It’s tough when you look fine but feel terrible, or your brain isn’t working right or your body is betraying you. It’s tough. One thing this journey has taught me is to never, ever, in a zillion years, ever judge someone when you can’t possibly have all the pertinent information. You never know what they’re dealing with.
One of my recent long, rainy treks was to visit a doctor who uses the most reputable lab (IGeneX) to test for Lyme disease. After being diagnosed with Chronic Inflammatory Response Syndrome (mold toxicity) two years ago, I’ve done all the treatment for that that I could. And although there have been some improvements in my overall health, it’s not good enough. There’s still something wrong with me. I still have symptoms that fill an entire page. This isn’t good enough. So I kept looking for answers. Maybe I’m just bull-headed, but maybe I’m actually a fantastic advocate. Who knows.
I found a doctor who does the Lyme testing and will interpret the results for you. I took the long, lonely, rainy trek to her office before the holidays. She met with me and kept telling me, “You’re not crazy.” As she was leaving the office, she turned to me and said, “Most people in your position would have given up looking for answers.” I responded, “I’m just not one of those people.”
When the doctor called with my test results, she said I should see a Lyme Literate MD. After the holidays, I took those test results on yet another long drive to a clinic in Wisconsin that treats Lyme, among other things. The nurse practitioner met with me for an hour and a half. She said I have Chronic Lyme. (Which I already knew because of all the research I’ve done. They should give out honorary doctor degrees if you do this much research.) She started me on the Lyme protocol, which involves rotating antibiotics and herbal treatments. It’s going to be a very long journey, but at least now I’m actually getting somewhere! I’m so tired of doctors telling me I have inflammation throughout my entire body, but they don’t know why and all their tests come back normal. So they say I must be crazy or I must need more sleep. Or I need to drink more water. Or take these meds that have a million side effects. Awesome.
Treating chronic Lyme takes a lot of patience, time, and knowledge. When you have an illness like Lyme, the buggies die off in stages. When you have a die off (aka Herxheimer reaction, or Herx), you feel even more horrible than you already do. After you detox from that die off, in theory you’ll feel better, incrementally. Not so fun. Tick illnesses are very smart, and they hide in all different parts of your body, hoping to keep feasting on you and draining your health. Normal bugs-- you can take an antibiotic, it finds and kills the bugs, and you’re done. Lyme bugs move, change, get smart about how you’re attacking them. That’s why you sometimes need to change the antibiotics and herbal treatments to effectively attack the bugs in different ways.
Another issue I have are genetic defects, or snps (pronounced ‘snips’). These defects make it impossible for my body to tolerate things that “normal” people can. For instance, I have the MTHFR defect that makes it impossible for my body to use folic acid in the way it is put into most vitamins. When you have this defect, you usually have a lot of reproductive trouble. (Four preemies, hello??) A simple saliva test can tell you if you have this defect. If you do, you take a different form of folic acid in a different vitamin, and problem solved. Every woman who wants to have children should have this test. What if simply taking a different vitamin could have saved my babies from being premature? My heart breaks every time I think about this. If only I had figured all this out 14 years ago…
I also have the CBS snp. When you have this genetic defect, your body can’t detox ammonia. Things that contain sulfur give off ammonia when you ingest them. Sulfuric foods include eggs, protein, broccoli. I can’t take Epsom salt baths, which are a very common method for detox. I can’t use some of the common detox supplements like Chlorella, because they contain sulfur. If I don’t limit my sulfur intake, my brain sits in a toxic ammonia stew, because my body can’t get rid of the poison on its own.
There are many factors that go into healing. When you have a couple big, chronic diagnoses, like Lyme, mold toxicity, Hashimoto’s Thyroiditis…PLUS genetic snps, well, you’re pretty much screwed. Up until I found out my genetics, I was taking Chlorella and doing Epsom salt baths three times a week, per doctor’s orders. I would feel so horrible after a bath, I would have to cling to the walls, because the world was tilting maniacally, and find my way into bed where I would collapse and wait for sleep to swallow me so I didn’t have to feel the world anymore. It was terrible. Now I know that those baths were poisoning me. Just because Epsom salt baths are good for most people doesn’t mean they’re the right way for me to detox. I can’t stress this enough: you have to know all the factors that are making you stay ill. You MUST learn your genetic makeup, the status of your hormones, your thyroid and adrenal glands, if your liver is working well, whether you have to eat gluten free, whether you have vitamin and mineral deficiencies, if you have allergies, if you have yeast overgrowth, or cortisol issues, whether your neurotransmitters are functioning correctly, if you have leaky gut, or Epstein Barr, whether you have other bacterial or viral or parasitic infections. These things are not hard to find out. Especially if you find a doctor who knows how to look at all these different pieces of the overall health picture. These are not things typical doctors look at, so if you have an atypical illness, seeing a typical doctor is like spinning your wheels in a mud puddle. You’ll get nowhere.
This list is overwhelming, especially if you have to figure it out COMPLETELY on your own, like I have had to do. You do start to feel like you’re insane. Sometimes I would question why I wasn’t feeling better after following my old doctor’s orders of more sleep, exercise, even Epsom salt baths. Years ago, I assumed doctors knew more than me and would be able to fix any problem I have. (Picture me laughing hysterically at my naïve stupidity) Now I know that not all doctors are created equal. I’m sure they do all try the best they can. But sometimes that’s truly not good enough. What enrages me is all the time I’ve wasted with all those doctors. If they didn’t know what was wrong with me, that’s totally fine, but they could have said, “What you feel is not normal. I will help you find a doctor who can help you.” If just one of those dozens of doctors I’ve seen had said they would help me figure this out, instead of sending me off with yet another prescription for a drug that would prove to further screw me up, that could have been a game changer.
Here’s the bottom line: you have to always, always, always be your own best, most diligent and tireless advocate. If you feel like a piece of your health is missing, you might have to search for it all on your own, sometimes for decades. If you know your kiddos are suffering with invisible disabilities, you have to stand up for them. You have to be absolutely ferocious and relentless in order to get them the things in life they deserve. You can’t assume that a single other person in this world will fix something for you. You have to be determined to do it yourself, if that’s what is necessary. If your kiddo has invisible disabilities, no one will say, “You know what? Your kid looks like he needs a different way of learning at school. Let’s hook you up with that.” If you have an endless list of mysterious symptoms, in my experience, no one will say, “I will help you figure this out. It’s too overwhelming to do on your own, so I will help you.” You have to know that sometimes, you will walk this journey alone. You have to just keep going. You have to ask questions of anyone and everyone who you think could help you gain insight. You have to read, learn, seek, think. And you also have to hold that hope out in front of you -always- that you will figure it out, find answers, and make things better. You will absolutely piss people off along the way. People will think you’re crazy and over-reactive and annoying. Who cares? Honestly, when your life or the lives of your children are on the line, who cares what other people think about you? At the end of my life, I will arrive at the Pearly Gates with the knowledge that no matter what else I messed up during my time on Earth, at least I never gave up trying to find a better life for my family.
I do have to say, once in a while, you find an angel in your path. You find a friend, loved one, or maybe even a doctor, who gives you a gift. A gift like understanding. Of reassuring you that you are not crazy. Instead, you’re brave. To those angels in my life- my dear friends and family- there are no words to express my gratitude for you. Sometimes I’m given the gift of compassion and love at the perfect moment, when I feel despair and darkness. My angel loved ones lift me back up and hold my hand and lend me their strength to keep on trekkin’.
If you have as many crazy things going on in your body as I do, it’s still not impossible to heal. You just have to be creative. For instance, because of my CBS snp, I have to limit my protein intake. Every day, I take a supplement called Yucca that helps break down ammonia in my body after I eat protein. I didn’t know about this until I researched my CBS snp. My new Lyme doctor verified that I should be taking this supplement so my brain doesn’t sit in a toxic stew of sulfur bi-product. I also drink lemon water as a way of detoxing. And instead of Epsom salts, I put lavender essential oil in my bath to relax and rejuvenate my body and soul. I can also use an infrared sauna to help get toxins out of my body. See? There are still ways to heal, even if you have a daunting list of crap that’s wrong with you. Nothing is impossible. Nothing is hopeless.
Here’s a crazy, spooky thing that makes me giggle: my family always jokes that I should just give in and become a vegetarian, because I have never liked meat. In fact, I have serious vomit issues with meat. It just grosses me out. I feel like poop after I eat it, I hate the taste of it, I hate the thought of eating a living, breathing being. The whole thing makes me want to puke. Now I know that I shouldn’t eat much protein, because it’s not good for my body! My body knew this already and has been trying to tell me! Through this journey, I’ve come to realize that if you listen very closely to the whispers of your soul, you’ll have all the information you need to be happy and healthy.
Every soul on this planet deserves to be healthy and happy. My kids deserve to have support at school so they can succeed. I deserve to know what’s really wrong with me so I know how to heal. The list of my diagnoses continues to grow. But I’d rather know everything that’s going wrong in my body so that I can be informed about how to heal. I don’t care how grim the news is, bring it on. Just let me find out the truth so that I know my health enemy when I see it. The next step is to bring my kiddos to the Lyme clinic, to see if we can find out more information about what is happening in their little bodies. Every symptom that they have can potentially be caused by congenital Lyme. Or it may be that they just have true Tourette Syndrome, with all of its fun comorbid conditions. Or they may have issues with strep, or neurotransmitter imbalances…I don’t know yet. But we’re going to find out.
I just want you to make sure you listen to your heart. Don’t be afraid to keep looking for answers, in whatever you’re searching for. Who cares if you piss people off or they find you annoying, or accuse you of insanity? Ultimately, you have to listen to your own soul, and know that you have the right to health and happiness. Sometimes you don’t find answers as easily as you want, or in the places that you expect. But just keep searching. You’ll find what you’re looking for.
Wednesday, January 18, 2017
My son is proof that miracles happen. My 14-year-old son recently got home from a 3-day trip with our church youth group to a water park 3 hours away from home. MY son. There are no words to describe how I felt as I ferociously hugged my boy to my heart before I sent him on his 3-day-away-from-Mama trip. I was so proud of him for wanting to go. I was worried I’d have to trek and fetch him early because he wouldn’t be able to handle it. I was nervous he wouldn’t take his meds. I was hoping he wouldn’t have a panic attack. I was so happy that he wanted to go on this trip, that he even wanted to try to go without me or Dad. I was so proud of my son.
Remember my son? The one who was born three months too soon, clinging to the cusp of life with the help of a ventilator. My tiniest baby- the one who squeaked in at just over 2lbs. My toddler who absolutely melted into a puddle of fear if a stranger even looked at him while we were out and about. Truly, if a stranger looked at him, he couldn’t function. He would cling to me as if his life depended on it, and usually burst into tears of terror. And if that stranger dared to mutter a “hello” to my adorable little boy, forget it. It would take me hours to help him recover.
My little third grader, who would wake in a panic at 3am most days, convinced he would miss the school bus that was due to arrive 4 ½ hours later. He would gather his belongings, wrap his coat over his tiny body, and have a meltdown that would last for hours. Until the school bus came, to be precise.
My son, who could not sleep. He couldn’t sleep at any age. Not as an infant, not as a toddler, not as a 9-year-old. Not until the psychiatrist gave us medicine to help him sleep. When parents contact me in desperation because their littles won’t sleep and they have heard that weighted blankets could help, I get it. I know the deep exhaustion that settles in your bones after years and years of no sleep, or at best, interrupted sleep. I remember my boy having panic attacks year after year when it was bedtime. No matter what we did. People said to let him cry it out. Let him scream. Leave him alone. The “Super Nanny” suggested putting him to bed without a word every single time he came out of his room. Over. And Over. And Over. And Over. To no avail. Doctors even suggested locking his bedroom door from the outside so he couldn’t get out when he was supposed to stay in. Yeah, THAT’S a great idea for a kid with an anxiety disorder! (not) We tried every single thing that anyone could possibly think of to get our boy to sleep. And noth. ing. worked. Until we had a prescription in hand that brings sleep to our son’s brain. It turns life off for a few hours so he can rest.
My son, who had so many panic attacks in middle school. He would cry at night because he was worried I would die, because every single novel they read in 6th grade English had a story line that revolved around a mother dying. Was there any compassion from the teacher? Nope. We got, “He’s got to learn to cope with these things.” Nice. We struggled through. My boy kept getting up and facing the impossibly hard days, one day at a time, until he got to this year.
Something has happened to him this year. He’s got it. He just ‘gets’ life. He understands how it’s all supposed to work. The change to high school has been an absolute success for him. He feels encouraged, supported, and valued there. He has more opportunities to be involved than you can imagine. He loves being busy, social, and making a difference. He has found an outlet not only through school, but also through our church. He has had the opportunity to be involved in service projects that impact our community. He has been able to have fun and grow as a spiritual being.
My 14-year-old just spent three nights away from me, sleeping not enough, but relatively fine. He did text me at 3:36 am one night (as I was up with his sister anyway, because none of our children can sleep), saying he was having a bad panic attack. But he texted back a few minutes later, saying that he was feeling better. Turns out, he accidentally took his nighttime meds in the morning, so he never got his morning anti-anxiety med. Hence the panic attack. But can you believe it? Three nights, away from home, without a parent, and he’s fine. Totally fine. (Although he did sleep for 17 hours straight when he got home. Did he sleep at all while he was away?? I guess that’s living, baby. Sometimes when you're young, life is too exciting and fun to waste time sleeping.)
When I was in high school, I had the opportunity to go on some incredible trips with my church youth group. I saw and experienced things I never would have had access to without that group. Those experiences changed the way I see things. I was able to help people, reach out to people, and grow into who I was meant to be. I was able to be away from home, but still in a safe, supported setting. I was able to be with friends. I love watching my boy be able to do the exact same thing.
I realize that although I want to keep him safe and home with me forever, I can’t tether my boy's wings. He has to use this time of his life to explore, grow, branch out. He has to have more independence so that he can become who he is meant to be. I love having a front row seat to watch my babies grow up. It’s the best gift ever. There are no words to describe how I felt as I hugged my boy SO tightly to my heart when I picked him from his 3-day-away-from-Mama trip. I was worried he would be exhausted and rage-y. I was nervous he’d have trouble fitting back into normal, boring family life. I was so proud of him for going on this trip that I could feel the pride bubbling from every cell of my body. My boy. He’s come so far. Who knew we’d ever get to this point? There are still challenges we face every day, but look at how far he’s come. He’s got this life thing under control. As a parent, there is nothing better than to walk with your child as they continue to grow into the beautiful person you always knew they were.