What is a a Modern Day Lazarus?
Well, for those who do not know as I did not (ha!), Lazarus was “a brother of Mary and Martha whom Jesus raised from the dead. John 11:1–44; 12:1–18.” (www.dictionary.com) My dad was actually the one who told me about it. It sounded perfect for my journey which has felt like it truly is a journey coming from close to the dead back to life with a lot of bumps in the process. Little did I know this journey would turn out to be quite literal. (See my almost ending ) So this is my story of a Modern Day Lazarus. Maybe Jesus isn’t the one who raises me from the dead but instead all of the love and support of my amazing family and friends on top of my determination to discover my health and discover ME (recover is simply re-covering the old and getting back to the same place, that is not what healing is about!).
My journey (the physical…the rather boring, long story can be found at the bottom):
The short: Poor Immune System growing up, lots of antibiotics ->Mono Fall of Junior Year of College-> Tonsilectomy-> periods stop- hormones plummet-> bladder issues became bad–> weird symptoms start–> Surgery for stress fracture on foot-=> fatigue flare ups begin –> Diagnosed with IC–> Digestive Problems arise-> Fatigue flares get worse-> May 2012: Stomach bug–> Full Blown Chronic Fatigue Syndrome. Functioning level drops to about 10% of pre-illness.–>Digestive Problems become bad -eating less and less->August 2014 Hospital and Near Death Experience (see here) -> October 2014- begin journey back to life.
The Lazarus portion:
When I first started going through all of this, I was so determined to figure out what was wrong, do some things to fix it and move on. Well it rarely works that way. My body was trying to tell me for a long time things were out of balance but I was oblivious to it. I lived a stressed lifestyle but didn’t really seem that way because I didn’t even understand how much the word stress can mean. Stress is on so many different levels. And we live in a society and country that thrives off stress. But if I wasn’t going to pay attention to what my body was telling me, it would make itself VERY clear that it had enough.
Even while I was starting to become more ill, I was still so focused on my original intended path. I still wanted to do the same job, live the exciting corporate lifestyle, live in the city, work abroad and the many others. I wanted to go back to my intense workouts. I wanted everything but the situation that was happening in my life. I mean, Hey, they always say mind over matter. But all of that was resistance and the more you resist and fight with your reality, the more difficult you make things for yourself. Sometimes there have to be a million crashes and breakdowns on the road until we take a step back and realize that maybe this road isn’t working anymore. It took me awhile to wake up and see this. I was home for my last semester TO GET BETTER and what was I doing? Working at the ND’s office 3 days a week, babysitting after and tutoring while taking 2 courses including my capstone. Hey if I had a flare up, I took a couple of days off until it passed. Denial, Resistance, not listening to my body, maybe all of it?
I was upset and angry and I was determiend that all of this had to go away. I was 21, why should I have to go through all of this? No one else I knew did. Why should I have to spend my last semester at home? Why should I not be able to eat whatever the hell I wanted? Why should I not be able to work and make money? Why couldn’t anyone else relate to what I am going through? I was angry. All of the things I heard about seemed so trivial, the bar nights, this gossip or that. I sat in therapy and rationalized everything happening into the ground. It was focused on how to manage a chronic illness. That’s what I needed at the time. That’s where I was at and that was the support I had to have.
And then came the full blown illness in May. What?! Hadn’t I spent long enough suffering!? I had done so much “work.” I had seen a million doctors. I had made diet changes. I had done the emotional processing for things that were “stuck in my body,” I had done the journaling work, I had done an Inner Quest Intensive Yoga Retreat and was the youngest one there. That’s it! I was done! I mean I had already done this stuff and taken true time off for SIX WHOLE MONTHS. Am I a typical American who puts things on the to do list, checks them off and thinks they’re done, or what!?
So next came the overwhelming fear and sadness about my condition. It seemed like one thing after another. I found out I had osteoperosis soon after ending up so sick. The best thing to do for osteopersis? Weight bearing exercise. Well I could barely walk down the stairs. All the bones in my feet were in tremendous pain and had bone bruises. My illness was at a level I had never experienced, I couldn’t drive in the car without having to put my head down and go to sleep. There were days I could barely form words because I was so exhausted and in so much pain. I read the outcomes of CFS and it was terrifying. People that had it for 25+ years. People on disability. People trying every single thing I was trying and not getting any better. I was a wreck. And for some reason seeing the word Osteoperosis on my Bone Density Exam results with all the bones in my feet in bad shape really bothered me and upset me, it sent me over the edge. I felt trapped. I felt like there was nothing I could do given what was going on. I was terrified about what my future would hold.
I would start to feel a little better, do too much and then crash hard. I felt so down. I read a book on dealing with chronic illness (called How to Be Sick…not actually what it sounds like very buddha inspired). It taught me a lot and had a lot of life lessons that I think would be good for anyone. It helped me become better at being in the present moment and also to let go of the resistance I was fighting with constantly. It helped with the whole “invisible illness.” But it didn’t fully take away my fear. In fact, the author still was sick after 10 years, bed bound to be exact, with the same illness! I didn’t want to end up in a place of giving up. One night as I lay there worried about if I would ever get better, I could feel the effects in my body. I knew what kind of chemical reactions happen from anxiety and stress. I envisioned the adrenaline being released, the cortisol surge wreaking havoc on my body. And then it dawned on me. I call it the biggest epiphany moment I have ever experienced. I was literally high on life for weeks after it. I realized I had two options in front of me. I could continue to live the way I was living: worried, upset and anxious, or I could simply let go and just trust. Trust in whatever it was. The universe, life, God, whatever you want to call it, that everything would be okay. I didn’t have to know what that okay meant, I didn’t have to know what that okay entailed or how it would look but I could trust that in some how some way, regardless of what happened, I would be okay. And that place seemed so calm, so inviting. Everyone has the option to step into this place no matter what is going on in their life but it’s not always easy to let go.
In my situation, I also took a step back and thought about it rationally. What would be more conducive for my health? To set off the stress response and alarm bells in my body? Or to stay present, calm and trusting and allow better shot at homeostasis? I think the answer was obvious. My entire outlook changed that night. I think my entire outlook on life changed too. When you truly let go of your excessive thoughts and worry, your plans, your desire to control things, it’s a strange place to be. Even for those of you who don’t think you do this, I am talking about the most simple aspects: the to do list, the plans for tomorrow, the recap of the day. It doesn’t mean you forget about them but they’re not going anywhere even if you don’t spend time thinking about them constantly. The next morning I ran around telling what felt like the world about my breakthrough. “I am going to get better. I know it.” I simply chose to reject the idea that I was summoned to live the rest of my life this way. I was healthy before, there was no reason I couldn’t be healthy again.
This didn’t mean I fought with the present moment. It didn’t mean I obsessed over getting better. I just went with the now and set my intention out that I would get better and soon began the steps I needed to take to have this actually happen. To get better I had to start living in the present moment. When you live in the present moment, there is very rarely anything to be stressed about or worried about. Stress and worry come from the long list of things we tell ourselves of : I need to do this, I should be doing this, I have to do this, and the what ifs? What If I don’t get this task done? What if I am too tired for my plans tonight? What if I have more health problems? Our good old “headmind” as RT calls it. You get the gist…. That day on, I decided I would only surround myself with stories of hope and recovery. I would cut as much negativity out of my life as I could. I stopped watching most of the news of all the gloom and doom in the world. I stopped watching the Dateline stories of this murder case and that murder case. I bought positive affirmation cards that I have next to my bed to read in the morning. I bought the book 50 Recovery Stories from CFS and many others. I didn’t care if people recovered from heart disease to IBS, it was the inspiration I was thriving off of. So what if there is minimal research on CFS? (Not that I am not a big supporter/advocate of more research and awareness) Really, I could sit around and wait 30 years for the research to catch up or I could shift my focus onto getting better. I wasn’t going to let half my life slip away waiting for the NIH to discover something for a condition that they have barely begun to acknowledge.
I made a list of all the things I could do to start doing for myself. I read a good book that put it so well: people say they want to get well but how badly do they really want it? Honestly ask yourself this next time you are complaining about a situation: how badly do you want something? Are you really doing everything you can that is in your control to make changes? I thought about it, I was doing a ton to help this happen but was I really doing everything I could? I made a list: simple things that I could do to help myself that I was often too lazy to do. My list of simple, REALISTIC, things that I could do: Baths with Epsom Salts a couple of times a week, more meditation, FLOSSING MY TEETH every day (your mouth is the portal to your immune system), cleaning up the products I use on myself to give my immune system a break, going to bed at a reasonable hour every single night The most important list: surrounding myself with positivity, cleaning out any of the negative baggage in my life, writing down all the things I was grateful for, continuing positive imagery of myself healthy again, you get the gist….
This doesn’t mean from that day on I went uphill and completely healed. I still had major dips and setbacks. In fact, I had a very rough two months in the fall. I still had my moments that I questioned everything. And hey- there still are those moments. But things have gotten better. I still had things to learn and I still do. I have continued to discover things on my journey. I have made more leaps and bounds with an amazing process called Reverse Therapy (I will post more later nothing like traditional “therapy”). I have continued with all of my treatments for the physical and biochemical aspects. I have been able to know myself more and more which has given me a better sense of things that will most likely help. In the beginning, I could barely tolerate any medications or treatments. By now, I have been able to handle some heavy duty stuff such as antibiotics. I wouldn’t have been able to get to this point without everything I have done.
I have become very aware of my body. That doesn’t mean obsessive tendencies. It just means I am aware when I am doing something that is not helping my situation or thwarting my health. I have become more aware of bad posture or clenching muscles. I am very aware when things have shifted or when my hormones have gone crazy. (Be very aware: hormones can have CRAZY impact on you good and bad!). I am getting better at recognizing when I have a need that I haven’t met or an emotion that hasn’t been dealt with. I have learned to appreciate every day. When I have a good day I feel like it’s an entire week because it is that valuable to me. I know (the majority of the time) I want to work in some capacity to help people going through this process. I would have never been able to know that if I hadn’t gone through this.
Although there are days I become so fed up with everything, I know this has permanently changed my life in more good ways than not. To get better you can’t be looking for your old life. Your old life is what got you to this place. CFS is about change (as I read somewhere) and I think many chronic illnesses are about change. What you were doing before is no longer working and most people don’t come to terms with this. Change is scary. It is easier to hang onto the same old path. In the vision of my healthy life, I take care of myself and yes, in reality, I will probably always have to take care of myself more than an average person has to. But that’s not a bad thing. Health, Harmony and Happiness involves taking care of yourself. You cannot take care of others or anything else if you don’t take care of yourself. In my future vision, I continue to eat healthy. I spend time outside. I keep stress low. I exercise in a healthy and gentle way. I know I will get to a point where I say “Oh yeah in my twenties I was sick for awhile….”
Lastly, I have learned patience. A lot of it. I have learned responsibility for my emotions. As I have learned in RT, “if anger, sad or fear lasts longer than two minutes, it’s an old issue.” This has drastically changed my relationships. I have also learned to embrace emotions, they’re not a bad thing. It’s healthy to express them. It’s healthy to FEEL them. Stuff them down and suppress them and guess where they go ? Stuffed into your body where they will linger and manifest as physical issues and sickness until you deal with them. And lastly, I have learned to “believe there are no limits.” (Chopra Center). So this is my Lazarus journey and I hope this can inspire someone as so many people have inspired me.
I am a human. I have my days where I misplace all of these ideas. I make mistakes. But my road becomes more smooth and paved the more I am able to learn all the above concepts. I am coming from the days of being bed bound to not just coming back to health but becoming ALIVE. And although my health still has some ways to go, I am more alive than I have ever been. And it is true, life is a drug itself once you wake up and realize what it means to live. And I hope everyone gets to experience this.
All is well.
***UPDATE 2015. After a Near Death Experience (see top of page for link or home page -post is from March 2015 ) I am making progress every day. I am able to walk more and more. I have slowly incorporated gentle exercise and yoga back into my life. I am able to do more things on my own. I am tackling getting better at all angles from antimicrobial herbs to brain retraining to lifestyle. See treatment page for more info. Most importantly I have learned how to be ALIVE. I am in extreme gratitude for all the things I can do. I live in the present. I have never felt so loved and grateful for that love as I do now. The road isn’t always smooth but I know I will only continue to go uphill from here. I wouldn’t be where I am without all the support, love and prayers from my friends family and even complete strangers.
The long physical journey:
I was always sick when I was younger: rounds of ear infections, pneumonia that hospitalized me… It then became sinus infections and every virus that was going around the classroom or dorm. In the fall of 2010, my junior year of college, things were going fabulous in my life. I had just returned from a semester abroad in Spain. I moved into a place off campus, my first “real place,” I just declared my own individualized major and was taking all classes that I was totally enthralled by. I landed a job in the Study Abroad Office working with Exchange Students when I was just excited to be able to even have an opportunity to volunteer. I was taking polo lessons that my school offered which was a blast. I was enjoying all the typical “college stuff” with my new Exchange Student friends and was taking fun trips and the like. My foot had been bothering me a little bit but not anything that made me really concerned, I didn’t always wear the most foot friendly shoes. One day in late September, I woke up and couldn’t walk. Little did I know this was the first piece of my physical deterioration. Putting any weight on my foot was excruciating. Well, I had never broken a bone before so didn’t really know what to think. People told me there was nothing to do for a broken toe anyways. So I limped around all over our HUGE campus. I wore heels during a big group road trip to Montreal. I even ace bandaged my foot a hundred times over and attempted to half run on the treadmill later that week (god I cringe for my foot now when I think of this). About two weeks later the pain was less excruciating but now I was sick. My throat was on fire and I felt awful. Off to the Infirmary I went to find out I had strep and needed Penicillin. “Oh since I’m here,my foot has been bothering me for awhile now…” (the toe had turned black and blue at this point). Down to the xray room I went so that I could find out the next day I had a bad stress fracture and that I needed to be in a rigid shoe for three months. And no running. At all. This was unfathomable to me but little did I know my body would make sure I would comply since that “strep” would never really get better. For about a week after the antibiotics I was better but in between was the toll of a heavy duty mid-term schedule with not enough sleep, a typical college saturday of drinking and house parties, and a quick lived fling. So sleep and health were probably not at the priority. By the time I ended up back in the infirmary she decided we should move on to looking at mono. I got a phone call within a couple of hours that I did in fact have mono and would need to avoid physical activity for at least three weeks. And another round of antibiotics for the current strep that was with it. The endless sleeping soon began. I decided that I had enough of getting sick and my swollen tonsils that seemed to be a big culprit in my never ending rounds of sickness. Off to the ENT specialist I went for an evaluation and we agreed on a tonsillectomy that I had tried asking my pediatrician about already 5 years earlier. The mono quieted down and came back full force at Thanksgiving. The first half of the break was spent sleeping many hours and my tonsils swelling back up to the point I thought I was looking at Strep throat again. Meanwhile my periods were getting further and further apart. I didn’t think too much of it as they tended to change around. In finals week I became sick with a terrible sinus infection with the excessive 5 in a row exams. My surgery was in 3 days but I was determined to do it as scheduled because I was determined to be back in action for New Year’s. I was exhausted and ended up moving my last exam. I went into my surgery two days later while still on antibiotics for the sinus infection. I recovered from the surgery after a minor complication only to notice my periods had stopped. I felt like crap, brain fog, moody, no libido and just overall not very well. After two months of no periods, I ended up at the gynecologist and after a failed Provera challenge, I was sent off to a Reproductive Endocrinologist. After my blood work comes back clean except for low Estrogen levels, I was told it’s stress-related and put on birth control. After a month on birth control, I felt very depressed and the other low Estrogen symptoms worsened. I was then switched to Hormone Replacement Therapy and given Premarin for two months. In the mean time, I had a MRI done on my pituitary that came back clean. The Premarin worked for awhile until very bad migranes started and my hair was falling out and something in my gut (post on this later) tells me to stop taking the Premarin. I was then basically told that I am probably just depressed and my hair falling out cannot possibly be related to the Premarin. I listened to my gut and stop taking it and immediately my hair stopped falling out, my mood immediately improved and things got better. I go through with the foot surgery in August 2011 for the fracture that never healed after trying Physical Therapy, A Boot, Crutches, and a plate in my shoe. The orthopedic surgeon asked me if I had endocrine issues going on after seeing I had an MRI on the Pituitary and the failure of the fracture to heal. He decided it’s probably related to that. I brought it up with the RE and was basically lectured that there is no correlation to the fracture that doesn’t heal and the low estrogen. Turns out there was, and there was a calcium absorbtion issue anyways and osteoporosis. So there! After surgery, the “brain fog” and fatigue cycles began. I would feel so spaced out and out of it. I would get these bizarre weak feelings. I had no idea what was going on. Of course, I was offered an anti-depressant. Before I stopped going, the RE referred me to a urologist for consistent bladder issues that didn’t change with HRT. After diet monitoring, I received a diagnoses of Interstitial Cystitis but that was really the least of my concerns with all my other bizarre health symptoms. I ended up dropping my full course load to part time to try to spend the extra two days with getting to the bottom of everything. Soon began the long list of specialties: Endocrionology, Naturopaths, Integrative MDs, Gastroenterology, Neurologists, a Lyme Doctor, Internists, etc. Thank god I was fortunate enough to have some bizarre looking lab work, although never text book enough to figure out–it was probably the only reason I never had to hear I was a basket case like most people with this condition do. As the months went by, I began to try all sorts of things in the meantime: Acupuncture, Massage, supplements and more. Things helped but don’t last. Finally I decided that I have to spend the last semester at home instead of trying to intern abroad. Talk about denial. After starting to go to Integrative Manual Therapy, my overall condition started to improve a bit. I still would randomly get exhausted and my stomach issues were getting more bizarre. If I got knocked out, it would be for a few days a time. One night, I cried hysterically to my mom because I felt like a crazy person. The symptoms were so vague and would come and go and there seemed to be no rhyme and reason. I started wondering if I should be in a psych institution. I graduated on time (a big accomplishment at the time!) and made a small trip to Costa Rica for four days instead of the intended three weeks. I surprisingly did pretty well there (environmental?). I came back home and went slightly back downhill. At the end of May, I took a day trip to Newport, ate a piece of fish that may have been tainted or it simply just sent my gut over the edge. Regardless, that was the straw that broke the camel’s back. I lay in bed crying that night from feeling so terrible. The next morning I woke up unable to move due to the exhaustion and pain. I couldn’t move from the bed for 24 hours. Somehow I knew I had just entered a whole new level of illness. I began to google Chronic Fatigue Syndrome and Fibromyalagia doctors in the city because I was out of ideas of what specialities to see. As fate had it, I found a doctor in New York who I found impressive based off patient reviews. I had always come back to CFS in my research because it was the only thing that made sense. I called and heard that she was booked for six weeks but somehow after inquiring more it turned out there was a cancelation for that day (fate?-universe gives you what you need?). Well there was no way I was going to be able to get to the city on my own. My Grandpa called the person that drives him around and we made the trip to the city with me laying in the backseat. And so began the backtracking of all my labtests and medical history and starting to put everything together. She was the first person to sit down with me for over an hour and go through every single test and piece of labwork I had done in the past year and a half. She put a very concise plan together. I started going to the city for shots in my ass every week as well as following a strict regimen of supplement intervention. Later in the summer, I also saw a lyme literate doctor with a focus in CFS and Fibro that I had made an appointment with seven months earlier (and thought there was no way I would need an appointment by July because I would be better! ha!) and basically use the team in conjunction. I My bosses continued to be helpful on many aspects: they helped with a gut plan, pain management, bodywork, etc. I also turned back to my old gyno who completely went into functional medicine to handle my hormones. I eventually was referred to an awesome Pelvic Floor Physical Therapist in the city who helped me tremendously with pelvic pain. And lastly, I found Reverse Therapy in October which has been huge, with an awesome DO who practiced family medicine for 40 years. Many ups and downs, experimental things, forwards, backwards but slow improvement does happen…..never give up! You never know what might help