All The Things Left Unsaid…

This post will be different from the others I have written. It’s not just an update this time. It’s also a reflection and in a way, an apology.

It’s been 2 years and almost 2 weeks since I arrived home from Klinik St. Georg in Bad Aibling, Germany. So much has happened that I don’t even exactly know where to begin. If you’re here for the apology, please keep reading because it’s coming.

Let’s start with the good stuff. I’m still doing very well. My Bartonella is back (streaks and symptoms) and I think my Lyme is too. I think that it possibly came from a reinfection (a new bite.) It could be too that my life has been full of stress in just about every capacity possible. I’m keeping my health in check and managing my symptoms (minimal) mainly through food, supplements and holistic treatment. I still have occasional bad days, but I’m mostly healthy, I’m healing from years and years of Chronic Lyme and co infections and the damage done by those diseases as well as treatment (particularly the antibiotics) but I’m continuing to progress. My stomach is in better shape than I can ever remember in my life and I had thought it would never heal after all the medicine. My Liver is healing, slowly but steadily. After 18 years of being on Metoprolol for a heart arrhythmia from Lyme, I am FINALLY OFF of that! I was told I’d never be off of it and having healed enough to fix my arrhythmia, is the best feeling! I did learn that I have a rare protein deficiency that is more than likely the reason I’ve suffered 5 miscarriages, but the good news is I’m going to see a hematologist in 2 weeks that may be able to help with that and if not, we finally have great health insurance for fertility treatment since my husband went back to work. We’re looking at moving out of state within a year or 2 or maybe even to Europe. I’m taking control of my life and living it to the fullest I can.

I still firmly believe that Klink St. Georg was my second chance at life. I would not be alive without their treatment. They gave me a second chance at a real life again. That second chance has been messy, chaotic, ugly, painful, lonely, isolated and full of strife and sorrow beyond what I could ever have imagined, financial problems, marital problems, loss of family and friends (both living and deceased) but it has also brought me great joy, happiness, a love of life, gratitude, humility and for the first time how to attain sustainable inner peace. I have found my truest dreams, wishes and desires and gained an understanding of humanity and compassion I didn’t think was possible for almost any human being, let alone me. I found a connection to my higher power that I have spent a life time looking for. That connection has brought me comfort and has changed me into someone I barely recognize but someone who I an truly proud of and happy to be. I am the best me I have ever been despite my flaws and shortcomings, but I am a work in progress. I am for the first time, capable of “feeling” the world and its people in a new way. The only sadness this brings me is that some of the people I have loved and cared for the most in the world are no longer in my life to see it.

I was listening to a song recently that I would normally not even have given a chance but I was curious. Its a song called “Lonely” and its by Noah Cyrus (yes, sister to Miley) and I wanted to hear what she sounded like. Well, with having emotions now and feeling EVERYTHING, I was in tears. (That’s what happens when you heal and the right side of your brain is getting more blood flow to it than its had in 30 years, after treatment and now it works so you have feelings you didn’t even know you had and get the pleasure of learning ALL of them.), She sings “I miss all my family” and ” And everyone’s dying, so I keep on trying to make ’em proud before they’re gone.” It really struck me to my core because I too miss ALL my family. And I too just want to make everyone proud before they’re gone. Later in the song she sings “I’m still ashamed of who I used to be.” It was that one that hit me at my core. Despite a rough, tough, “I’ve got my shit together”, “I’m a bad ass warrior who can do anything” exterior, I was always so timid and shy and afraid to hurt people’s feelings. I was a super sensitive but in the line of work I was in (dispatching for 911 and a volunteer firefighter and EMT) I would have NEVER survived if I didn’t push my feelings down and toughen up. I wore my mask for so long that eventually I forgot it was a mask and not my face.

Lyme Disease changed everything about life. Not once, not twice, but over and over and over. Because of my life experiences, I was broken in ways no one could have seen or known. No one knew about the constant physical/emotional pain I was in, no one knew of my multiple sexual assaults including rape, no one new of my body dysmorphic disorder, my severe and crippling anxiety, my post traumatic stress disorder; that I was a domestic abuse survivor, my paralyzing insecurities, my fear of confrontation or my “intuition.” No one knew because I didn’t let them know which is sad because it was so easy since it seemed most people didn’t really seem to care once I couldn’t “do” anything for them (at least that was my experience much of the time.) Its not that I lied about it or denied it (although I can’t say I never denied things), I never let so much as a crumb of the truth spill out. I cleaned up the mess before anyone could see. With the exception of 2 people, those who have been close to me for years (in particular the last 2-3 years), have no idea the depths of depravity I’ve been to. I wasn’t able to talk honestly, about who I was and the things I experienced or the way I truthfully felt because I was not at a point in my own life to deal with things, let alone challenge the “norm” the way I needed to in order to be understood or heard. I had very severe trust issues and until 2 years ago, I felt like the only person in the world I could trust besides myself was my mom and I couldn’t even find the courage to confide these things in the person I trusted most in the world! And now here I am, openly admitting these things to strangers and to my friends and in some cases I’m sure, my enemies. Things can change quickly and without warning. Its one of of life’s constants. Change, for good or for bad, will always continue.

I was sick for so long that I didn’t know what it was like to be healthy. My version of healthy was in no way shape or form what was considered conventionally healthy. But the turning point that accelerated my diseases, was my brother’s death 8 and half years ago. When my brother died suddenly, that was when my illness started to take over. Since then, I have learned that trauma like that can often either trigger or escalate illness, particularly with “autoimmune disorders.” I missed my half sister’s wedding because it was only 3 weeks after my brother’s death and I was in the hospital on the cardiac wing because I “failed” my physical cardiac stress test after only 4 minutes. I fought to be discharged to make it to the wedding, because I was supposed to be maid of honor and because I really did want to be there but with just coming out of the hospital, literally the day of the wedding rehearsal my mom said there was absolutely no way I could drive 2-3 hours and do all the things I should have done to fulfill my duties and to be a part of the wedding. For a while, some of my own family even believed that I “faked” being sick to get out of going to the wedding. That was a very, very painful blow to me, because that in no way is who I am. I carried so much guilt about not being there and have cried tears that no one ever saw.

I went from doctor to doctor, always trying to find the “root” of the problem. It was the next specialist who always had something “new.” People thought I was a hypochondriac because there was always something new; some new weird symptom or diagnosis. When I was, at one point diagnosed with Fibromyalgia, I got the courage to talk about it at work and one of my co workers told me “that’s just a made up disease that they (doctors) use as a catch all” and that “it didn’t really exist.” But despite every negative comment, every whisper behind my back, every doubt that people threw at me, I knew inside of me that I was sick and that there really was something wrong with me. I continued my search, trying to maintain as “normal” of a life as possible. I was in my 20s and going out was the thing to do. I just put on my mask and toughened up and kept going. While I NEVER set out to intentionally harm anyone or their feelings, I know that I did. I am still ashamed of who I used to be. I was going through life one day at a time, just trying to survive and causing others hurt or pain, despite no intention of doing so.

Because of my brother’s sudden death, I feared the worst. I was sick and no one could really figure out what was wrong with me. I lived in fear that every day might be my last, whether I knew it or not. I was scared to die and I was even more scared that I would die because no one knew what was wrong with me. Grief is a hard enough emotion. Grief and fear together were even worse for me. I kept trying though. I never gave up no matter how much I wanted to and no matter how much adversity I faced. I think the process of finding my Lyme and co infection diagnosis was just preparing me for the hell that was to come during treatment and recovery. I lived in fear of death every day and what that would do to my mother. I had seen how much it had destroyed her when my brother passed and I couldn’t let her lose another child, her only other remaining child. So I fought and made a promise to try to make what time I had left in my own life count.

Weeks before my 30th birthday, I was given a diagnosis of relapse remitting multiple sclerosis and prescribed medicine that required daily injections. I has already planned my first trip out the country to celebrate my milestone birthday. I was going to Ireland with my aunt. I was terrified having to travel with needles and all my meds but I didn’t let it stop me. I went to Ireland anyway and it changed me life in ways I could never have expected. I remember landing on the plane and feeling “better.” When we walked outside to catch the bus to the car rental place, I had to stand on a patch of grass because I felt compelled to be on real Irish “soil.” When I did, I experienced the strangest sensation throughout my entire body. I felt alive. I felt home.

That trip was the beginning of a long journey I wasn’t even aware I had started. There were so many “strange” things that happened in Ireland. I was more comfortable in a country I had never been to, I felt more at home there than I did in my own home. I started having crazy dreams and feelings of deja vu and just knowing things. At the time I wrote everything off as just a great vacation and that I was in love with country and the people and the culture. (More on why this is so important in a minute.)

I returned home from Ireland and couldn’t stop thinking about the feelings I’d had there. Meanwhile my MS was getting worse, despite the daily injections and medications, and my diagnosis was changed to primary progressive MS, which is the most aggressive form. I was not taking that laying down. I took matters into my own hands and started researching alternative treatments and therapies. My higher power was guiding me the entire way even when I didn’t know it. I found a doctor who had the same disease I was just diagnosed with and healed herself through food. I became entrenched in research and how to heal myself when doctors and Western medicine had failed. I was preparing for the big changes I needed to make when my great aunt died. My Aunt Betty had been like another grandmother and best friend to me. Despite knowing that she had lived a long and full life, this was the straw that broke the camel’s back. My body couldn’t take any more of anything. It couldn’t handle more grief or stress or anything. I left work on January 2nd, 2014 after receiving a call from the hospital that my great aunt’s time was coming to an end and I needed to get there as soon as possible. It had been a crazy day at work and we were short staffed so I couldn’t leave early. I left that day, with one thought in mind, getting to my Aunt Betty to be there for her. I never thought that would be the last time I’d ever work at my job again. My great aunt died the next morning around 4 am during a big snowstorm. I took my funeral leave from work. As the viewings went on and the funeral was over, I got sicker than I ever remembered being. I couldn’t stand up straight because I was in excruitating pain. Thinking I must have injured myself or maybe it was the MS, I went off of work on the Family Medical Leave Act to try to get myself healthy enough to go back to work.

Even with being sick and in terrible pain, I made the changes to my diet that I need to as of February 1st of that year. I came off the injections and I started to feel better. Maybe I was ready to go back to work. But I was waiting to see a specialist for clearance to return. I was waxing and waning from day to day on how I felt. I finally made an appointment with primary provider and she was able to figure it out. I walked in there every medical test or record I had in hand and broke down. But after that day I felt like I was on my way to finally getting the RIGHT treatment. That’s how I ended up at Jemsek Specialty Clinic in Washington DC. I was so excited to finally have my answer and my treatment plan, I didn’t even care that I was so close to death because there was hope again.

Despite my hope and the gift of staying alive, I received so much negativity from family and friends about Jemsek being a quack, or this was just another pipe dream for me to follow down the rabbit hole. I was told by family that I “faked” a seizure and herxheimer reactions or that I was “stupid” for looking things up on the internet about my disease. I listened to myself and did what needed to be done. This was the beginning of a whole new form of isolation for me. During the first 3 months of my treatment, my mom was able to take FMLA from work and moved in with me to take care of me. But after those first 3 months, my mom had to go back to work and I was alone all day, everyday. I had an occasional visitor but they became less and less the longer I was sick and in treatment. It was hard for me to engage, or have phone conversations and I drifted away from most of my friends. I felt guilty I couldn’t be there for people I loved and cared for. As time progressed even most of my family believed I was “faking it” and lying and that it was a cry for attention. That was the real soul crusher. My mom, my grandmother, my best friend Amber and my friend Kara were the only 4 people I could really count on and even with my 2 remaining friends, the distance grew. They had lives and work and I wasn’t flexible. I was devoted to my health, staying alive and getting better because I wanted a life again. I wanted to get well and get married and have children and live a long life.

For 2 and half years I spent the vast majority of the time, not only by myself but confined my house. I started to, what I thought at the time was, hallucinate. I remember my brother saying to me “if you can sit in a room with nothing but yourself and be ok, then you are ok.” It took me a long time to understand what he really meant by this. I was sick so I couldn’t go for walks, or work out, I couldn’t even follow most TV shows. Most of the time I could barely move, I was bed bound for long periods of time and I was by myself. I finally learned how to meditate, something I thought I’d never be able to do in my life. I started having weird experiences and seeing things I couldn’t explain. I didn’t know what to do to stop it, I didn’t even know what started it. But then things got intense.

I have always had a voice in my head guiding me. I always thought it was my conscience, that voice of right and wrong in your head, and I always thought mine was just a lot louder than anyone elses’. I always had a very intense intuition. When I was a little girl I used to see colors (auras) around people. I felt so much when I was young. But because of my choices in life and many traumas I had been through, I had learned to suppress it, to push it down and ignore it. Why was it coming back now? It was because in some way treatment was working. I was getting blood flow back to the right side of my brain again. My brain was re-learning how to work. I had emotions upon emotions. Everything I felt was like feeling it for the first time. I had to learn what these new emotions were and how to name them and process them. I would cry over the slightest things I saw on the news, or heard on TV. I remember when Corey Monteith from Glee died. I had seen the show once and wasn’t a big fan but when I learned of his death, I fell apart. I remember sitting and crying hysterically and thinking to myself “why am I this upset?” It was sad and I tried to rationalize it with relating in to personal things in my life but it still didn’t make sense to me.

Around this time, I was growing frustrated with my progress. I was better but still very sick. I did what anyone who is sick enough and desperate enough to be healthy would do, I started looking outside of the scope of what Western Medicine had to offer. I got very big into meditation, I did what yoga I could, I tried Reiki. I was looking for anything I could that thought might even remotely help. I was desperate. It was my Reiki master who introduced to me the concept of lightworkers and empaths and added to me a group she belonged to on Facebook. That’s where I found a psychic medium who I connected with. I contacted her and started working with her and I started to feel like I was healing my soul and as I did that my body started to get better too. She told me that I was gifted and I’ll openly admit at first I was not on board with that idea, but I was still fascinated by the work she was able to do. I started taking classes related to spiritual things and my gifts. I found out I was, in fact, a physical empath and I had gifts I was not aware of. I started doing a lot of exploration on things I was starting to learn about. Soul mates, twin flames, past lives, soul contracts, breaking curses, healing acenstral wounds, anything and everything spiritual. As I went through this process, it was hard. It involved facing demons and trauma and bringing the darkness to light. I went on to become a certified Reiki Master myself as well as a Shaman. I was able to communicate with the dead, and to see/hear/feel/know things no one else could.

I know for a period, even my own mother thought I was losing my mind. It wasn’t until I was able to give her the “proof” that everyone seeks. I had had my cards read in the past but it was always “just for fun.” I was raised Catholic. I didn’t know why I was going through my spiritual awakening and at times, I was scared. I went through a lot of struggle trying to rectify what I had been raised with and what I was actually experiencing. Even my husband thought it was imaginary until he too got his proof. Amber knew, but in the beginning even she doubted me.

When I was at my sickest just prior to going to Klinik St. Georg, my heart was stopping and I was back to living in fear that my next breath could be my last. I was tired and worn out and I wanted to give up but something inside me kept tell me I just couldn’t quit and give up. I remember one particular day when I was at my mom’s house with her and my husband and I collapsed and passed out on her living room floor. I remember waking up and seeing an angel. I thought to myself “this is it. This is the end of my life. This angel has come to take my soul away.” But then I started to hear this angel speak to me (it happened to be Archangel Gabriel) and instead of calling me to leave my body He began to speak to me and comfort me and told me things would be okay but it was going to take some time. Once He finally left and I was back in reality I could see how scared both my mom and my husband were. I had been talking out loud to him and they both thought I was dying too. But I didn’t. I made it to St. Georg and I got significantly better.

The more I leaved about Spirit, the more I started to understand my journey. Why I had been so sick for so long. Why I was incapable of feeling for so long. Why I spent so much time living in a mask to protect myself. I started understanding the why of so many things. I learned that there are no such thing as coincidences; everything happens for a reason. I was able to put to rest and let go of so much trauma and anger and hurt and really let myself be myself. I found my voice and I realized why I had done the things I done in my past. I still haven’t mastered it all and I continue to learn new things every day. I did try to turn my back on Spirit more than once and every time I tried, I got more information thrown and me and I was compelled to fully embrace a new way of life. Maybe this is similar to what people say when they are “born again” or “find God.” However you choose to interpret it is up to you. One thing I know for certain is that the more I accepted and welcomed Spirit and practiced my gifts, the better I felt. I was more comforted that I had ever been in any mass/service. I used to like to sit in an empty church because it allowed me to feel close to God and I felt like it was the best time for me to talk to God but also to listen. I think I will always have that Catholic girl in me but now when people ask, I tell them I’m an Intuitive, or a spiritual Catholic or that I am simple devoutly spiritual.

Through my gifts, I have been able to help others. I learned that we are all energy and that even though a vast majority of the population (at least in this country) still don’t believe in energy work, it is a very real thing and it can be felt. I have been a conduit for people to make peace with their loved ones, helped them. I have worked on people using Shamanism and/or my giftts and helped them feel better. This is not where I ever thought I’d be in life and if you would have told me any of this 10 years ago, I would have told you that YOU were crazy.

This is my life now. I have learned what I need to do to be at peace. I have stopped chasing a life that was not meant to be mine. I gave up on chasing happiness because happiness is not permanent, its a state that can change at any moment. I’ve learned how to quiet my mind, to listen rather than speak. I have learned how simple of a life I really have always not only wanted but needed. I learned that finding inner peace is the greatest gift of all, for when things are at their worst that peace can sustain you when the happiness is long gone.

I have lost many family and friends, because of my illness and my actions because of being sick. I was so distraught about all the loss, but I have finally made peace with my past. I still miss my family, especially those that are still living. I long for the days when we were close but life has taken us all down different paths. I have forgiven and know that we must each make our own way in this crazy, tumultuous life we are all apart of. I once thought that there was a chance for us to heal and come back together, especially after my brother’s death but when even that or my Aunt Betty’s death or my own battle to survive changed nothing, I slowly began to realize that chances of reconciliation were dwindling every day that passed. I will still love my family until the end of all time and I would still drop everything to help but I can’t make them want to fix things and I’m tired of trying. My wedding was the event that brought everything to head. When my own godparents whom I’d always had so much love and respect for, my cousins and my aunt all replied “NO” to my wedding, I knew their decision was made, That was the last olive branch I extended. And the really shitty thing is that, I didn’t want them there for a gift, I wanted them there for my grandmother, as a chance for her to have her family together and I thought it might be the beginning of healing. I wanted to introduce them to my husband and see what a wonderful man he was. I thought we could some how come together and be that close family again. But truth be told, I felt like because they didn’t believe in my sickness, let alone that that sickness precluded me from attending either my cousin’s wedding or my other cousin’s house warming, I felt like it was pay back. I felt very much like, “well you didn’t do it it for us so we won’t do it for you” and that was NOT the family that I grew up surrounded by. What they never wanted to hear and never saw was how much it tore me up inside to NOT be there for them, how much I wanted to be and how guilty I felt and the tears I cried, how I begged and pleaded with my mother to let me go even if just to say I loved them and despite how much pain it caused me. My mother was right to not give into me, she was right to look out for the health and well being of her child when her child was being reckless with her own very precious health.

To my friends, we may have gone out separate ways but its not out of ill will or malice, we just drifted apart. Sometimes I want to reach out but I don’t even know where to begin because I feel so different and I worry if we’ll still have anything in common. I don’t know if you still miss me the way I miss each and everyone of you or if you have any desire to know the person I am now. I wish the best for you in your lives. I’m sorry to those I’ve hurt or offended or haven’t been able to be there for. I’m sorry for being cold and insensitive at times. I’m sorry I didn’t learn sooner but this was my journey in life. And if you still bear grudges against me, I hope that for your sake you can let them go because I’m not the person I was when you knew me. I ask for forgiveness but I understand those who don’t want to give it and I am okay with that. Once I learned better, I have done better. I have healed myself. My brain actually functions the way its supposed to now. I’m still not the pinnacle of health but I’m improving. I am someone who loves without boundaries, who will put everyone else ahead of myself because I genuinely want to make everyone happy, and although its an impossible task I still try. I want to be remembered for who I am now and all that I’ve survived and accomplished.

I have learned so much because of Lyme and my co infections. While I wish I could have skipped the bad stuff, it was essential to me becoming who I am now. I’m still evolving and still trying to be the best me I can be. I still have my issues and some will never really leave me but I have forgiven myself and keep trying to heal everything I can on all levels, physical, emotional and spiritual. Its a process that will continue until the day I leave this world and silver cord connecting me to this body is severed. I have tortured this body, and hated it, but I’m finally working on appreciating this body I have because it has survived everything I’ve thrown at it and is still there for me.

To anyone who is suffering, whether physical/emotional/spritiual; to anyone who feels like “something” is missing, know that you deserve to bring an end to the suffering, you deserve to feel complete. You deserve to life life on your own terms and to be authentically who you are. When you live authentically, the right people will come into your life and the wrong ones will leave and that’s okay too. Jim Carey once said “just because you lost me as a friend doesn’t mean you gained me as an enemy. I’m bigger than that. I still wanna see you eat just not at my table.” My table is a lot smaller these days but its growing again. I know the people at my table love me for who I am unconditionally, in all my weirdness and out there ideas. I grew because I was forced out of my comfort zone and even with all the negative things I had to go through, I wouldn’t change any of it because of where I am today.

I know how incredibly lucky I am to still be alive. I know how blessed I am to still have the people I have now. My husband and I both had things we had to go through before we met and we had even more to go through after we met but he has been a wonderful blessing to me. He is more than I could have ever hoped for in the man I would marry. Yes, he’s flawed but he’s grown so much and I’m so incredibly proud of the man he has become. And we have a love that I could only every have dreamed of. He knows everything about me, my quirks, my insecurities, my dreams, my fears, all of the darkness and he loves me with and because of it all. I really did marry my best friend and we are on the path of making the life we both dream of. I thought I would always have to “pretend” or “hide” parts of me, but with him I don’t. Our relationship has survived more than I can put into words, but we are at the best place we’ve ever been in. We both let our darkness out and held on because “we loved with a love that is more than a love.” So if you’re out there like I was, worrying about finding love and getting all the things you want, don’t give up. Be yourself and you will find that which is intended for you. Once we both stopped hiding our darkness and secrets, we found each other again. I say again because my husband was actually an exchange student in high school and we know we have been at the same place, at the same time, several times in our past. We just weren’t ready yet. Spirit knew it and when we were ready we found each other and in each other we found our true selves.

I don’t plan on stopping writing ever. I don’t know if I’ll ever blog on here again, maybe I’ll start a new blog, maybe I’ll just keep everything in one place. I know my journey is not over and never will be. I’ll keep learning and healing and working to better myself. I wish you all the best! If I can ever be of help, please reach out and I hope that in some way, by me sharing journey at least one person has been helped.

This entry was posted in alone, Antibiotics, Anxiety, Babesia, Babesiosis, bartonella, being ok, Blessed, chronic illness, chronic pain, Coinfections, Death, depression, disappointed, dreams come true, Dying, eat well to be well, Educate, emotional, emotions, faking being ok, Fighter, fighting back, finding your way, food, food matters, getting better, go your own way, God, growing, growing stronger, healing, healing yourself, Help, helping yourself, Herx, herxing, highs and lows, holistic, homeopathic, hope, I am the fire, I will get better!, I will win, illness, Immune problems, Immune system, Its not your fault, Journey, Klinik St. Georg, LBC, letting go, LLMD, loneliness, Love, Lyme, lyme disease, lyme's disease, Medical, Medication Overload, Meditation, Misery, money, money matters, Mycoplasma, obsessive compulsive disorder, OCD, oral medication, oral meds, Pacing yourself, paleo, paleolithic, poisonpeople, pretending, psychic, psychic abilities, Real People, reflection, religion, right brain, scared, sick, sick individual, spiritual, Spiritual, spiritual awakening, Spiritualty, St Georg Klinik, St. Georg Klinik, staying sane, steps, Support groups, Survival, TBD, TBDs, Team Lymestorm, Ten Millions Voices, thankful, tickborne, tickborne diseases, ticks, Treatment, True love, trying new stuff, Uncategorized, unconventional, yoga. Bookmark the permalink.

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