All The Things Left Unsaid…

Posted on February 9, 2021 by lymestorm

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.

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Returning to Life

Posted on October 13, 2019 by lymestorm

I took a lot of time off from writing (too much time.)  At first it wasn’t really intentional.  Life was happening and it was chaotic and busy and I wasn’t checking in. I was more focused on living my life for the first time in years than I was about “documenting” and “sharing” my journey and struggles.  Then I thought, “should I even bother anymore?” Which turned into “I’ll do an update 9 months after my discharge date from St. Georg.”  Now here I am almost 10 months later and finally getting to it.  I feel compelled to share what’s been going on and what I’ve done and hopefully it will reach someone whom it may help.

My life has changed so dramatically since I walked into Klink St. Georg on January 2, 2019.  I am still not fully healed but I am healing.  My health has improved so much.  No more passing out.  No more stopping breathing.  My heart hasn’t stopped beating.  My pain is minimal for the most part.  I’m thinking more clearly. I’m not trapped in bed for days and weeks.  I’m starting to feel like me again.  The path to recovery hasn’t been easy, but it has been worth it. I’m grateful everyday for my life, to wake up breathing and in an overall good place.

In the last 9 months so much has happened.  Here’s the short version: my husband had another neck reconstruction, he fought and survived osteomyelitis in his cervical spine (almost killed him); I had a miscarriage; my husband relapsed and went to inpatient treatment; I tapped into my spirituality, took some classes and discovered my own gifts; my husband had hernia surgery; I started seeing a Psychiatrist again (I was diagnosed with borderline personality disorder – which makes so much sense to me after learning about it); I had my own neck surgery (triple level fusion); and turned a year older.

I was doing so well after the Klinik.  When I came home I was fully dedicated to my recovery and nothing else was more important until my husband’s life was on the line.  Being the kind of person I am, I became more concerned about his well being than my own (old habits die hard.)  I started letting my own recovery be compromised.  I wasn’t eating well, I was spending long hours and sometimes nights at the hospital.  My health started to slip.  I was frustrated.  I was angry that I didn’t get the time I needed to devote to my own health and recovery.  But’s that’s life.  Things happened beyond my control and I did the best I could at the time.  Without my treatment at the Klinik I would have never been able to do be there for the things that happened.  Before it would have killed me with all certainty.

In May I was introduced to the Medical Medium Anthony William.  It’s funny how people/things appear just when you need them.  (You can say God or Spirit or Life or Karma or whatever belief you subscribe to does this.)  I have always been a firm believer in the healing powers of food.  This is has been tested and proven to me on multiple occasions, not just for myself but many others I know as well.  So when I heard about Anthony William, I thought I would look into it and see what he was about.  I am beyond grateful that I did.

I devoured Anthony William’s first book “The Medical Medium”  and I told everyone I talked to about it.  I started drinking celery juice (16 ounces) every morning on an empty stomach.  Let me say, I HATE CELERY! So the idea of drinking straight celery juice first thing in the morning was gross and disgusting to me.  But I thought, “don’t knock it until you try it.” In just a few days I was already seeing major changes for me.  I got my mom on the juice train too.  I would get up at 5:30 every morning to make juice for her and I so she could get it on her way to work in the morning. (I ended up getting a slow masticating juicer and gave my mom my first juicer.)  Then I got my husband on board after a dare. We all started noticing a lot of positive changes.  My mom liked it right off the bat (she also likes celery) but my husband was like me, he hated the taste.  It took a little while to get used to.  In the beginning both my husband and I would just chug it to get it done and over with, we both looked at it as medicine.  Both of us are still juicing 5 months later.  If we skip a day, we just don’t feel as good.  My husband quit drinking coffee for a while.  He was someone who could drink 2 pots a day and never think twice about it.  He said, that having celery juice in the morning just made him feel better.  Even now that he has started drinking coffee again, it’s rare and he can only handle one cup (2 at max.)

Seeing the wonderful benefits of celery juice wasn’t enough for me.  I thought “if just doing juice makes me feel this good, let’s try the rest of his advice.” I haven’t done everything, but I’ve done a lot.  I juice daily.  Celery juice is a must.  I combined the liver rescue smoothie and the heavy metal detox smoothie and love it! I’ve changed my diet to mostly plant based.  I still enjoy animal products once in a while, but it’s a treat, not the norm anymore and I am more aware now than ever of where it comes from.  I used to eat butter like it was going out of style (I enjoyed chunks of straight butter.) I haven’t bought butter in over 2 months.

I didn’t make the out right choice to become plant based, I just started incorporating more fresh fruits and veggies and my tastes began to change with that.  I noticed that when I didn’t eat “well” I didn’t feel “well”. If I wasn’t eating healthy my body started to feel deprived of nutrients and that’s when I became hungry and started mindlessly eating to try to satiate that “need”.

I started adding supplements back in, again largely based on the Medical Medium’s recommendations.  They worked better than anything I had every tried.

Now, for the pill that was really hard to swallow for me.  Anthony William says that Lyme (what we call Lyme) is viral and not bacterial as we’ve all been told.  It’s Esptein-Barr or Shingles or Herpes or a combination as well as toxins.  (For a more in depth explantation see the book “The Medical Medium” by Anthony William.)

As someone who has suffered with Lyme, Bartonella, Babesia and mycoplasma; someone who put myself through hell and back with nightmarish treatments; someone who tried so much just to get well and be healthy.  I’ll admit I had a hard time believing that he could be right about it.  How could the medical community be so wrong? How could we have been lied to about something so major?  Antibiotics not working and doing more harm than good? It took me a long time to really believe that Anthony William might be right.

I took a long hard look at all the treatments that I had been through and how long I had been sick and how much I lost from being sick and all that I had done in the hopes of being well one day.  What’s my verdict? Well for now, based on trying all the things I have, I believe him.  Before anyone gets upset and stops reading, just hear me out.

I believe that my Lyme doctor saved my life with the treatment I started there. I am incredibly thankful for all my Lyme doctor did for me.  I still believe he was my best option in the U.S.  I was so sick that I needed rapid intervention and treatment.  I did see progress when I was with him and I did get better than I was.  Then I started to regress a lot which quickly which leads me to…

Going to Klink St George was my next step and ramped up my treatment as well as my success.  I got so much better than I had been, and in a very short period of time.  I believe I was successful in my treatment there and do not regret it at all.  I was at my lowest point when I started treatment there.  I think Germany was really important to my recovery.  I am beyond blessed to have had the opportunity to go there.  The hyperthermia did kill a lot of things.  I was clean eating and gluten free while I was there and I didn’t have to worry about food since everything was taken care of for me.  Chelation and plasmapheresis did wonders for me! They made me feel amazing and were my favorite treatments.  Doing IV vitamins and antibiotics was great. The Klinik was a fantastic, well rounded treatment. I wish I had found them sooner.  The treatment there was more inclusive and extensive than anything you can find here in the United States.

But finding the Medical Medium was my next step.  I went Paleo in 2014 after I was diagnosed with multiple sclerosis and the meds were just making me sicker and sicker.  I did it to try to heal myself.  It was my first real attempt at healing myself with food. It was incredible for me.  I now know that I never had MS! For years I believed in Paleo based on my personal success with it.  I learned quickly that when I was eating right my health was better. But going mostly plant based has been key for me.

Like most things in life, we learn through trial and error.  We continue to evolve and learn and grow.  We are introduced to new things, new tools and information that help us in the transformation process.  This is why, as a community, we HAVE to talk to each other and share.  What’s right for one, may or may not work for another.  But food is key! Food is the one thing throughout all of my health struggles that has been and remains the absolute most critical part of health, treatment and wellness. It is the basis for any and all success that I have had.  Food is the fuel for our bodies to go through life.  You wouldn’t put corn syrup in your car and expect to get very far.

I am by NO means perfect with my food.  I still “cheat” if you will but it’s my treat to myself.  I haven’t given up everything that I used to eat all the time. Oddly enough, when I do treat myself to things that I don’t normally eat, I more often than not find that I don’t like the stuff I used to love.  The memory of it is better than the reality of it now.  I know that if I do treat myself I may end up paying for it.  I have made decisions to eliminate certain things from my diet but they may not be forever.  I cut things out so that I can create the right environment for my body to heal itself.  I’m rebuilding myself from the inside out.

I still have far to go.  After decades of the wrong stuff my body was in horrendous shape.  When I was thin I wasn’t healthy, I just looked it.  Add in some makeup and I actually looked like a normal person.  When I stopped the antibiotics and was in bed for months on end, I gained weight and a lot of it.  It was incredibly hard for me.  In my late teens, I struggled with bulimia and was laxative junkie.  I felt the need to fit in and have the perfect body.  Gaining all the weight remains a massive struggle for me.  There are days that I am frustrated, days where I can’t stand to look at myself and cry from the weight.  There are days where I want to restrict, starve myself or purge whatever I consume. I don’t though.  I have lost weight, albeit not nearly as much as I want.  I wish it was coming off faster but I didn’t put it on overnight and it’s not going to come off overnight.  I remind myself that this time, I’m doing it the right way and that’s a process.  I tell myself I am still healing because I really am.  I’m not just healing from sickness and disease but I am healing from the damage of the treatments that I have been through.

I can look back at all I’ve been through and the first thing that comes to mind is that I am a warrior.  I am a survivor.  Each step in my journey has brought me to where I am now.  My health is vastly improving.  My marriage is healing and is in a good place right now.  I’m connected to people in a way I never have been.  My faith and spirituality are stronger and more deeply rooted than ever.

Will I be sick forever? No.  I don’t for one minute believe that I will.  I have been sick for a long time and recovery takes a long time but it is worth it.  As for my journey there is not a single part of it that I would change because again it’s brought me to where I am at this very moment.  If someone else was going through what I went through, my hope has always been that my journey could some how help them to navigate their journey more easily.  I can say that had I done this or that sooner or known what I know now I could have saved myself a lot of pain and suffering but this is the hand that I’ve been dealt in life.  Do I think that I could have healed myself completely through food? No.  Surgeries were needed and by the time that I found out exactly what was wrong with me, I was in crisis mode.  I needed medicine to keep me alive.  Had I known about food and the true extent of its  healing powers a decade ago, I absolutely believe that most of what I’ve gone through (physical trauma excluded) I could have healed myself from.  Had I truly known the importance of food (specifically the right food) my treatments would have been much more successful.

While I believe food is probably the most integral part of my healing it is not the only aspect of it.  I needed to heal my mind and my soul as well as my body.  Events from my past were keeping me sick as much as the physical disease. I feel like I’m getting a handle on things and working on obtaining balance and finding happiness and coming to a place of peace.  I’m not there yet, but I’m on my way.

This is my life, my journey.  It will never be finished, not until I’m dead and gone and even then I hope that I will have given to the world something that will continue even if my name is forgotten.  I continue to set new goals for myself, to find new aspirations, and dream bigger.  I strive each day to be a better person.  I’m not even close to perfect.  I have let friendships fade that I miss.  I got lost in my own sorrows and struggles and have nearly drowned in a pool of self pity. I haven’t been “present” for others when I should have been.  There are times I feel great shame for my shortcomings.  I feel we often need to lose ourselves before we can really find ourselves and know who we really are.  For me this has been the case.  I had to fall apart to rebuild myself.  After all that I have been through, not just my disease, but in life, for the first time I feel like I’m truly on the path that is right for me to become my best and healthiest self.

 

 

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Road to Recovery

Posted on February 20, 2019 by lymestorm

It has been exactly 4 weeks today since I left the place that changed my life; 4 weeks ago I walked out of Klinik St. Georg in Bad Aibling, Germany, a person with a new hope for life and healthier than I had been in over a decade.

The journey to the Klinik started six months before I checked in on January 2nd, 2019. It was a process my husband began for me.  After hearing about the Klinik from a family friend, my husband began researching it and trying to find a way to get me there.  It wasn’t until September that I was actually told about going to the Klinik.  By that time my health was deteriorating rapidly. My Lyme doctor in the U.S. was ready to put me back on a port.  After hearing about the Klinik and learning about them through my own research (I know I wasn’t comprehending more than a quarter of what I was reading) I decided to put my faith in them.  I put off having a port and thus any further treatment in the U.S.  I had already been off of antibiotics since the beginning of July because my stomach and body was so worn out and beaten up that I wasn’t able to absorb treatment.  It was risky for me to take the chance of going off antibiotics that long but I just had faith that I would get to the Klinik and that was really my last hope at getting significantly better.

We got the paperwork in October to fill out.  Due to my declining health it took me a long time to be able to fill it out, even with the help of my husband and my mother.  I had to sift through years of medical records to find some of the information that I needed, after all I had been sick for almost two decades.  I was the one that knew what to look for and the one who had to find the information.  Finally by the beginning of November I had completed all the necessary information and returned the information to the Klinik.  It then became a matter of waiting.  What I thought would take weeks, took days.  I had a date set, January 2, 2019.  My in-laws gifted me treatment at the Klinik.  It was the best present I have ever received or could have ever asked for.  I will always be eternally grateful to them.

The months leading up to treatment were some of the worst of my life.  I was getting sicker daily.  My heart was stopping and I was having to be revived by my husband.  I was in the hospital.  I had a massive herpes outbreak (the first one of my life) which taxed my weakened immune system even more.  I was living moment to moment, never knowing when my last breath would come, when my heart would take its last beat.  I was so depressed and I was so sick that I welcomed death.  I was making my peace.  I was trying to hold on long enough to get to treatment in Germany and I saw it as my last chance at living. I was barely able to pull myself together in front of anyone other than my husband and my mom, to seem functional.  It wasn’t until I came home from treatment that my mom confessed to me that she spent so much time crying and telling my aunt that she didn’t know how much time she was going to have left with her daughter.

I wasn’t sure that I was going to even be able to make the trip to Germany, let alone make it through treatment but I did.

We left the U.S. on New Year’s Eve.  The airport was empty.  Most people would rather be out celebrating than flying on that night.  Once we got through security, we sat in the lounge.  We had sat by the window and I remember looking out and the first plane I saw was “Aer Lingus” which is Ireland’s airline.  It made me think of my trip to Ireland and how inspiring that had been.  I saw it as a good sign of things to come. I posted on Facebook:

“This year I received the best Christmas present I could ask for (not to mention my family.) My in-laws are paying for me to go to Germany for the top of the line Lyme treatment. As I write this, I’m sitting in the Admiral’s Lounge staring out at the planes departing.  It’s New Year’s Eve and While everyone else is out partying, I’m already celebrating.  This is my chance to come back radically better and to begin a new life, healthier that I have been in many, many years.  So 2019 starts with 3 weeks in patient in a hospital, with my first wedding anniversary (in the hospital but celebrating in Munich after discharge.) I want to than all those that have been there for me, supported me, prayed for me and have understood my inability to be the friend I once was and will be soon again.  Mostly I want to thank my amazing husband for putting this together for e and my family for their unconditional love and support for without the I would never had made it this far and none of this would be possible.  See you all when I get back, hopefully much healthier and happier and thinner! Happy New Year’s everyone and be safe!”

The third comment I received on the post said “This is the best “new year, new me” post I’ve seen!! Good luck to you and your family.” It was my new year and it would truly prove to be a new me.

Treatment was easier than I had expected.  Most other people said how hard it was but I guess being that I had been through such harsh and hard treatment in the U.S. it seemed much easier to me.  I was used to IV’s and a central line and antibiotics.  Even hyperthermia was easier than I expected.  Maybe I was just lucky.  I don’t know but either way I was glad for it.  The worst thing for me was colon hydrotherapy.  I had not been looking forward to that at all.  The first one was horrific for me.  It was so painful.  I swelled up and felt like my insides were going to explode.  I know that I was tense despite me trying not to be.  Others did not have anything similar to my experience (at least those that I spoke with at the Klinik.) My second round with it was much easier and not painful at all.  I guess that with years of stomach issues and so many medications I was really backed up and that was the reason for my awful first experience.

My third week of treatment was solely based on repair,  injections, plasmapharesis, I-therm, chelation and the list goes on. It was a week to really detox my system and repair it on a cellular level. It was such a great experience. The plasmapharesis made me feel incredible! I slept through most of it and I felt so amazing when it was done.  They got over 2 pounds of toxins out of my blood and body!

Leaving the Klinik, I couldn’t believe how good I felt.  My mind was clearer.  My pain was minimal. My fatigue was greatly improved.  I came out better than I could have ever even dreamed.

The treatment I received at the Klinik was nothing short of a miracle for me! The staff was amazing and so wonderful.  Everyone there wants to be there to help people.  I have never had such an experience in the U.S. and doubt I ever will.

The day we left the Klinik, we headed to Munich.  My husband and I were staying the night there before flying out the next morning for the U.S. and we were also celebrating our first anniversary.  We went to the city center. (For those of you who have never been, you can only get to the outskirts of the city center because there are no roads in the city center, so it is all walking.) I walked and walked and yes, ultimately I overdid it.  I paid the price that night because by the time we got back to the hotel (3.5 hours later) I could barely walk because my feet hurt so bad.  Instead of going out for dinner we ended ordering room service (which was so delicious), relaxing in bed and finishing up packing for the flight the next morning. While my feet hurt so bad, I couldn’t even see straight, I looked at my Apple Watch and we had walked over 2.5 miles.  I had run up the stairs at the Klinik before I left. These things were unbelievable to me.  I could barely walk when I arrived at the Klinik.  I couldn’t even walk a single flight of stairs.  I had trouble walking 10 feet.  And now I was able to walk over 2.5 miles in just 3 weeks of treatment?!

I had been worried about coming home.  I was thriving in the Klinik.  I was comfortable and being taken care of and I knew I was safe.  How was I going to do once I got home? I had after care/at home treatment to do.  Was I going to be able to do it myself? Would I crash and relapse? I was in unknown territory again and I was actually scared to come home.

The day after we got home, I slept.  All. Day. I let my body rest.  I knew that a major pitfall for people after treatment is that they feel better and think they can do so much but they actually end up burning out and slowing recovery and healing.  The next couple of days I fell into that too.  I came home to a house that didn’t seem like mine anymore, a house that was cluttered and not immaculate and I wanted to change all of that immediately.  I started decluttering and straightening and despite my best efforts to pace myself and take breaks I over did it.  I didn’t feel it for about a week and then I realized my body was catching up to me and I needed to rest.  I had to put the brakes on hard and force myself to stop.  I needed bed rest and recuperation but I was terrified of being back in bed again and getting stuck there.  Years of living with Lyme had confined me to bed and I was desperate not to end up back in that place.  It took a major mental adjustment.

When you are sick for years and years on end it does psychological damage.  It changes your brain.  You have to learn to adapt to what your new “normal” is.  I spent years never knowing when a “good” day would come and when it did I knew I needed to pack as much into that “good” day as possible because I wasn’t sure when I’d have another one and I knew that I would be in terrible pain the next day anyway.  Coming home I’ve had to learn how to shift that mentality again.  A little at a time.  Good days come more often than not and as long as I pace myself I can get there.  I’m still working on this.  I am trying to listen to my body and rest when I need to and try not to see it as a sign of regression.

Beside my Lyme being treated at the Klinik I also discovered a host of other problems that had not been addressed in the U.S.  First of all was my heavy metals.  I was literally at toxic levels with a multitude of metals.  I received Chelation and that was treated and helped tremendously.  I’ve got to be very careful with everything I put in my body now.  Everything has to be organic and heavy metal free and natural.  While the Klinik only said no gluten and no sugar, I have gone back to being strict Paleo again because that has done such wonders for me in the past (so no gluten, no dairy, no soy, no sugar.)  Going to the grocery store is a nightmare now.  I have to read every ingredient on everything I buy and look at where my food is coming from and its expensive.  I have to be very careful with any type of medication I take.  I’m working with my primary to come off as many prescription medications as I can so that I don’t continue to poison myself with pharmaceuticals. Food has become my medicine again but more intensely than ever before.

I also found out that I have a severe hormonal imbalance.  Lyme can screw with your hormones and throw them out of whack.  The fact that I was on birth control for so long (almost 15 years) also complicated my hormones.  The Klinik sent me home with a protocol to correct my hormonal imbalances and I’m already seeing a major improvement with that.  In 2 more months, I will be more fertile than I was at 16 and will be able to start trying for baby and will be healthy enough to not only conceive a child but actually carry a child to full term and I don’t have to worry about transmitting Lyme to a child because I’m in remission.  No fear of breast feeding either.  Dr. Douwes is so sure of this he told me to write him when I am pregnant and send pictures when the baby is born.

Finally, I got the correct testing done on my thyroid.  I was diagnosed with very severe hypothyroidism. I was put on a combination of supplements to correct that.  One of the supplements is available by prescription in the United States and the head doctor at the Klinik, Dr. Douwes said that the medication in U.S. is one of the only medications that is better here than in Europe. Since going on the medications for my hypothyroidism, I’ve lost 30 pounds and my energy is improving.  It’s definitely working for sure! All the weight that I gained from being in bed is literally falling off.  Dr. Douwes promised I would see a change and that I would continue to lose weight and be able to get back down to my goal weight in about 6 months.

I haven’t had any signs or symptoms of my coinfections (Babesia, Bartonella or Mycoplasma) since my second hyperthermia treatment.  The Klinik does NOT treat or cure coinfections.  They do say that because your immune system is reactivated and boosted it CAN help you fight the infections on your own.  I believe that since my coinfections were targeted and treated so heavily before treatment that after treatment my body was able to fight what was left in my body.  I’m still keeping an eye on them and if needed, I will get treatment for them again.  But so far so good.

I’m still doing treatment at home.  I have tons of supplements and my body is still healing.  I still have a long way to go.  Lyme wrecked havoc on my body and it will take time to recover from all of that.  The hyperthermia is still working.  They say it can take up to 12 weeks for hyperthermia to still be working in your body.  My mind is still healing but I’m able to think again.  I can talk without pausing or losing my train of thought.  When we first got home, my husband kept telling me I was talking too much but I was finally able to say things I couldn’t get out before.  The psychological effects of being sick for so long will take even more time.  I am not cured but I am in remission.

So did it work? Do I think it was all worth it? ABSOLUTELY, WITHOUT A DOUBT! I still believe that my Lyme doctor in the U.S. saved my life. Without treatment here, I would be dead.  They treated me coinfections and kept the Lyme from getting worse.  But Klinik St. Georg was where I needed to be to truly get better.  I wish I had know about them sooner.  The cost is expensive but minor compared to what I have spent just in the last six years here.  I would tell anyone with Lyme and/or cancer to go there immediately.  Don’t trust medicine in the U.S. I met people from all over the world at the Klinik with similar stories.  One woman’s daughter had even been seeing the same Lyme specialist I did in the U.S. with the same story.

One thing that I attribute my great success to is the fact that I finally “let go” of control while I was at the Klinik.  From the moment I walked through the doors, I decided to let go of whatever I thought I knew about Lyme and treatment.  I surrendered completely to God and turned myself and my life over to him.  I trusted in the Klinik and their program and what they have proven to work.  I never questioned anything (well other than what something was or how it worked.) I completely trusted.  I let myself be taken care of, I asked for help when I needed it, I let myself and my body focus on healing and believing that it would work.  I celebrated every single small improvement I had.  I went in with and maintained a positive attitude throughout the entire process.  This, I think, is key in treatment.

I still have aftercare and healing to do but I’m adjusting to my new “normal” and I’m appreciating every day.  I finally feel like I have the opportunity to have a life again and to actually be able to live again!

 

Posted in Amen, Antibiotics, Babesia, Babesiosis, bartonella, being ok, Blessed, caveman diet, chronic illness, chronic pain, Coinfections, Comfort, Death, detox, dreams come true, Dying, eat well to be well, Fighter, fighting back, food, food matters, getting better, go your own way, God, growing, growing stronger, healing, healing yourself, Help, holistic, homeopathic, hope, I am the fire, I will get better!, I will win, illness, Immune problems, Immune system, IV infusion, Journey, Klinik St. Georg, LBC, let go and let god, LLMD, Lyme, lyme disease, lyme's disease, Medical, Medication Overload, Mycoplasma, oral medication, oral meds, Pacing yourself, paleo, paleolithic, Real People, reflection, religion, sick, sick individual, St Georg Klinik, St. Georg Klinik, steps, Survival, TBD, TBDs, Team Lymestorm, tickborne, tickborne diseases, ticks, Treatment, trying new stuff, Uncategorized, unconventional | Tagged , , | 2 Comments

Something BIG and Something NEW

Posted on December 1, 2018 by lymestorm

I haven’t written in so long.  I considered never writing again.  I was tired, sick, worn down and didn’t really have anything new to say.  I was doing was the same old thing, day in and day out, getting sicker with every passing day. Barely functioning and needing assistance with basic daily living, I just couldn’t pull myself out of the hole I was living in.  So why start writing again? Because something BIG is happening! Something I hope that will be a complete game changer in my fight against Lyme and my co-infections. Something that I want to be able to document and remember.

I have been accepted at a world-renowned treatment center in Germany  (St. Georg Klinik) AND I am being gifted the cost of treatment! One month from today I will be boarding a plane to Germany (just outside of Munich) to start a 22 day inpatient stay at a hospital that ONLY treats Lyme and cancer.  My husband (who happens to speak fluent German, as that is where he grew up) is going with me and will be receiving exposure treatment since Lyme is proven to be sexually transmitted.  His treatment will be 3 days.  We have been working on this for months and it has finally come to fruition.

So what is so special that I would travel so far and be in a hospital that long? I will be receiving treatment that is both medical and holistic and dietary, some of which is not approved in the United States, although used in other countries.  It’s the whole picture being treated at once.  The biggest thing that they are known for is systemic whole body hyperthermia in which they put you under general anesthesia and raise your body temperature to 106.7 degrees Fahrenheit for several hours to basically “bake” or “fry” the spirochetes to death, followed by intensive detoxification. I will receive 2 of these treatments (along with other therapies) and my husband will receive 1 of the treatments during his 3 day treatment.

Some of the other therapies that are part of my treatment plan (more may be added when I arrive and further evaluation and testing is completed) are as follows: dark field blood analysis; Bioscan; oral hygiene set; infusions; Ozone therapy; andulation bed and singulet oxygen therapy; laser therapy; blue light; magnetic field treatment; detox foot bath; enemas; colon hydro therapy; skeletal program; physical therapy (lymph drainage, feet reflexology, Reiki, massage) and a detoxification program.  Because of how severe my case is and how sick I currently am, the klinik has recommended an additional week at their facility to help me detox better and speed my recovery. During that week, I will continue my detox program but several things will be added: plasmapheresis, immune modulation therapy with biopeptides, mitochondrial support and I-therm.

Following treatment at the klinik, I will be sent home with follow-up care and a 6 week basic oral supplementation package to take home (other supplements may be added as needed.)  I will continue certain parts of treatment when I return home.  It will take 4-8 weeks for me to fully experience the full results of the hyperthermia.

For those wondering why I would do all of this to myself the answer is simple: because I want to live again – I want to have a life and feel better.  My body has been wrecked by years of antibiotics and I need to be healed.  I have been off of antibiotics since the beginning of July.  My body is not fully absorbing the medications and supplements that I am on.  I’ve had to increase my dosages to just get what is therapeutic for me.  My only other option here would be to go back on a port and do IV antibiotics again to get the right amount of medication into my system.  I went through so much hell with treatment through a port before that I am not eager to go back to it.  Its debilitating and I cannot be left alone for at least the first 3 months with the port in.  I can’t drive with the port in.  And there’s an extremely high possibility of me having to learn how to speak, read, write, move, etc. all over again.  I could pump my body full of more and more medications with little improvement.  I’m choosing a different path, a new path and hopefully a more successful one.

While the klinik has a 98% success rate, it is by no means a cure.  As of now with medicine, Lyme remains incurable after 18 months.  Being that I have had Lyme for nearly 19 years, I am passed the point of being cured.  Will I need antibiotics again? It’s possible.  Will I need treatment in any form again? Yes, it’s possible.  But if I can get well enough and learn different techniques for maintaining optimal health with a chronic disease, then I will be able to hopefully cut off a major relapse again.  I will be able to get treatment, should I need it, at a much earlier point.

This treatment has given me a renewed sense of hope.  Hope that I can not be bed bound for weeks or months at a time.  Hope that I can stop being hospitalized.  Hope that I can lead a life worth living again.  Hope for having children and to be the best wife/mother/daughter/friend/person I can possibly be.  While Lyme can be passed from mother to baby via the placenta, if my spirochete load is down and my symptoms are under control (in remission,) I will be able to go on a protocol by my current Lyme doctor that reduces the risk of transmission to less that 3%.  I would be able to carry a child of my own.  And should I choose not to carry a baby, I will still be able to BE a mother through adoption or a surrogate. My only undying dream in life has been to be a wife and mother.  I got married and now the possibility of being a mother again is within reach-that alone would be worth any hell I have to endure to be able to a mother who can take care of her children and be active in their lives and not be absent due to this disease.

Please understand that I still think my current Lyme doctors are phenomenal! They saved my life.  I have been a very challenging and exceptional case (per my doctors).  I have had many abnormal things happen and many, many complications, mostly due to my Lyme going untreated and misdiagnosed for so long.  I highly recommend my Lyme doctors! However, the United States remains so far behind so many other countries, not only in treatment of the disease, but the acknowledgement of the severity of Lyme, Chronic Lyme and neuro-borreliosis. (This year the United States voted NOT to approved treatment codes that are accepted by the WHO (World Health Organization) and they cannot be voted on again for the next 5 years.  That’s 5 more years that the government can deny and 5 more years that hundreds of thousands will suffer and not be able to afford treatment, and 5 more years that insurance will NOT have to cover Lyme treatment.)  The United States targets Lyme doctors because the CDC (Center for Disease Control) and NIH (National Institute of Health) do not acknowledge or accept the undeniable proof that treating outside of their “guidelines” is effective. As of this writing, most Lyme doctors do not take insurance or are not covered by insurance, to protect themselves from the government.  Simply put, I cannot get the treatment here that I can receive in Germany because it is not available in this country.

I have hope again.  Real hope is something that I have not had in years.  Its been something that I’ve had to convince myself still exists.  With Lyme, treatment can be (and often is) horrendous.  It’s mentally, physically and emotionally brutal.  I have sworn, since the very beginning, that this disease will not take me without a fight.  I have wavered over the last several months, at times begging my family to just let me let go, but I’ve held on.  This treatment is a new chance for me.  I keep counting the days and they can’t go by fast enough.

I know that there are people who are skeptical.  People who doubt.  People who think I’m just grasping at straws.  But when you are sick, when you are just existing and not living and in pain and suffering everyday, all day, you do what you can.  You research.  You ask. You talk to others.  You do whatever you have to do to get better and improve your quality of life. Why do so many terminal patients try experimental treatments when all other conventional means are exhausted?-because they want to live and so do I.  I’m fighting with every ounce of me that I can. I am EXTREMELY FORTUNATE to have been given this opportunity! I do not deny that at all.  I am blessed to have the love and support of my family and my friends-without them I would never have made it to this point and I wouldn’t be able to make it to treatment without being taken care until I leave. Thank you to my team for all your love and support! I’m going to make you all proud and show you that I take nothing for granted and make the most out of this opportunity! Love you all!!

 

 

 

 

 

 

 

Posted in Amen, Antibiotics, Babesia, Babesiosis, bartonella, Being prepared, Blessed, chronic illness, chronic pain, Coinfections, detox, dreams come true, emotional, emotions, Exhausted, Exhaustion, fighting back, finding your way, getting better, getting worse, healing, Help, holistic, homeopathic, hope, I am the fire, I will get better!, I will win, illness, Immune problems, Immune system, Journey, LBC, let go and let god, LLMD, Love, Lyme, lyme disease, lyme's disease, Medical, Mycoplasma, oral medication, oral meds, sick, sick individual, St. Georg Klinik, staying sane, suicidal thoughts, Suicide, TBD, TBDs, Team Lymestorm, thankful, tickborne, tickborne diseases, ticks, Treatment, Uncategorized, unconventional, What to expect | Tagged , , , | Leave a comment

Woman Down

Posted on October 19, 2017 by lymestorm

It’s a beautiful fall day outside.  I can hear the children laughing and playing.  I’m confined to bed today.  I am in excruciating physical pain and emotionally I am a disaster.  My life has spun completely out of control and I’m trying to regain some sense of normalcy and indepenence.  I came to the realization yesterday that I can no longer do that on my own in any sense.

For almost a year now I have been sliding further and further into the worst depression of my life.  I’ve spent months in bed too tired to get up and wondering what’s the point if I do.  I have missed out on life.  I’ve had no pleasure.  Even planning my wedding has given me no joy, except to know that I will end up marrying the love of my life on that day.  I’ve worried my family sick.  Lost who I was.  I had to turn my finances and getting my meds over to my mom because I could not longer handle the stress of all it.  My demons have gotten the better of me.

In the last 2 months I have been to the hospital 4 times by ambulance.  First it was for passing out, which turned out to be genetic (and added more pills to my daily regimen, as if I didn’t have enough already.) I went into respiratory arrest one time because of it.  I found out that I have multiple ovarian cysts, with one being ruptured. Then I was dosing and some how caught pneumonia (probably from being in the hospital so much.)  For the past couple of weeks I have had catatonic periods where I simply cannot move.  My eyes are apparently semi open but I am completely unresponsive.  It happens when I get emotional.  I have been crying almost non stop.  I think I’ve cried more in the last couple of weeks than I have in my entire life.

My mom made the decision to take me to my primary care’s office.  Keep in mind that until yesterday I had not driven in nearly 2 months.  My primary recommended that I get my psychiatric meds checked and referred me out.  Yesterday I saw the doctor. He said that I was on too many meds, including too many antipsychotics, psychotropics and benzodiazepines. All of them had been prescribed by my Lyme doctor for various symptoms that the Lyme has caused.  He stated the meds he wanted me off of right away and wants me off the benzos completely.  He wanted me to stop one benzo immediately and they would work on tapering me off of the other.  I wasn’t a fan of the doctor at all but figured he knew best and planned on complying.  He kept asking me how much and how often I did “pot.”  I explained to him that I was on Marinol which is concentrated THC and was prescribed to me for pain control. The response I got was “Pot is pot, I don’t care how you put it. So how much do you use it?” I was so pissed off. (There was some excitement when the staff caught another patient listening outside the room I was in and the girl went crazy and had to escorted out.)

The psychiatrist barely looked at all the paperwork I had filled out.  Pretty much all he told me was that I was on too many medications and I had endured a lot in my life.  (No shit, really?!) I wanted him to ask me more so that he could find the right medications for me, but alas he did not.

I made the decision last night that I need to go to a dual diagnosis rehabilitation/detoxification center.  I can’t handle benzo withdraw at home by myself.  I never thought I’d be the one to go to rehab/detox.  If I go the way of the psychiatrist I will be detoxing for months on end and still be really sick.  That I can not handle.  Being sicker than I already am? Are you kidding me? I can’t do drawn out detox along with treatment for my Lyme, Bartonella and Babesia and depression.  I’ll end up dead.  There was time only a few weeks ago that I was convinced I was going to die because of my disease.  I won’t be able to handle what is coming, it will kill me and I don’t have the strength to do all of that at once.

There is another factor to throw into the mix, my eating disorder.  I was a laxative junkie, anorexic and bulimic in high school.  I spent a lot of time in therapy over the past decade getting it under control and even though I still have body image distortion/issues, my food had not been a problem.  My weight has fluctuated up and down over the years but I was able to handle things and keep them in check.  But over the last several months my eating disorder has become a major problem.  I don’t eat all day and binge out at night.  Because of the stress I have been under I have had a lot of stomach issues including vomiting and diarrhea, both of which I have welcomed.  The vomiting has triggered that part of my brain that tells me its a “good” thing versus being a bad thing and a sign of how sick I have been.  It’s now completely out of control and I can’t get it in check.  Add my stress, my diseases, and now detox and I’m at the end of my rope.  I don’t know how much more I can take. I want to have hope and feel like things will get better but that light is growing dimmer by the day.

I decided that rehab is the best place I can be.  I can safely detox from the benzos. Yes, I know how sick I will be, but I will have medical staff to safely monitor me and put me on antiseizure meds to make sure that I don’t have a seizure(s) while detoxing.  I would have the counselors and psychiatrists on staff to help with my stress and eating disorder and I would safely be able to stay on my protocol for dosing for my Lyme and coinfections.  I was up late last night researching facilities and up early this morning calling places to find a place that accepts both women and my insurance.  I have Medicare because I am on disability and Carefirst Blue Cross and Blue Shield as a secondary insurance, which makes me have to stay in state and is a complete joke.  Not only have they not paid a cent for any of my Lyme treatment but now they won’t pay for rehab.  Most places do not accept Medicare and cannot/will not use BCBS as my primary insurance.  I do have people who are helping me and looking at options and scholarships or “gifting.”  I have no idea how soon or if I will be able to get into a program.  I’m a complicated case that some facilities are just not willing to take on.

I’m scared out of my mind.  I didn’t do anything wrong and now I’m addicted to prescribed medications that I have to get off of.  I will have nothing for my anxiety or PTSD.  The flashbacks and nightmares will be stronger than ever and I will barely be able to leave my house if I don’t get help as soon as possible. My sleep is going to be non existent, which my body needs to get better.   I just can’t spend months upon months living like this.  I just hope something comes through soon, so I can do this and get better.  I want to have a life worth living again.

I managed to sleep for a few hours today out of sheer exhaustion from all of this and from my physical pain but other than that I have been consistently crying.  I needed to write today.  Its been a while since I last posted anything.  I debated about posting this.  It’s an insight into very personal issues, some of which not even my family knows about and will be shocked to find out.  But I want other people to know, so hopefully my struggle, my pain will help them see the light. If I can face my fears (including going to detox) then maybe it will give someone else the strength to do the same.

 

Posted in Amen, anorexic, Antibiotics, Babesia, Babesiosis, bartonella, begging for help, binge eating, bulimic, chronic illness, chronic pain, Coinfections, Death, Depraved, depression, desperate, desperate times, detox, Dying, eating disorder, eating disorders, emotional, emotions, Exhausted, Exhaustion, faking, faking being ok, Fighter, fighting back, finances, financial help, friends, getting better, getting worse, go your own way, healing, healing yourself, Hell, Help, highs and lows, I will get better!, I will win, illness, Immune problems, Journey, LBC, Life is unfair, LLMD, loneliness, Lyme, lyme disease, lyme's disease, Medical, Medication Overload, Misery, Mycoplasma, No Stamina, obsessive compulsive disorder, OCD, oral medication, oral meds, rehab, scared, sick, sick individual, Sleep Deprivation, spoon theory, spoons, staying sane, steps, suicidal thoughts, Suicide, TBD, TBDs, Team Lymestorm, the spoon theory, tickborne, tickborne diseases, ticks, Treatment, trying new stuff, Uncategorized, What to expect, withdrawl, Zombie | Tagged , , | 3 Comments

Sweating It Out

Posted on July 21, 2017 by lymestorm

Its a sweltering hot day.  Its a dosing day.  And I had to leave the house for a prescheduled oil change on my car.  I’m sitting in the waiting area and still sweating.  Summer months tend to be the hardest on me. The heat is so horrible.  I can’t regulate my own body temperature and with my Lyme carditis my heart starts palpitating and fluttering and makes me very dizzy and lightheaded.  I’m constantly drinking water, though I still feel dehydrated.  While everyone else is out enjoying summertime activities I’m confined to air conditioned rooms or bed.  (This is why I chose to get married in January in the middle of winter so I won’t overheat, even honeymooning in Paris in the winter for the same reason.)

To top things off I decided to wean myself off of my Nucynta (for pain) so I’m suffering slight withdrawal symptoms (upset stomach, bowl problems, insomnia, sweating (more than normal), anxiety, etc.) I was up last night at 120am after only 4 hours of sleep due to the insomnia. My fiancé got up with me and despite having to work today at 1pm he stayed up with me until 830 this morning when I was finally able to go back to sleep.  He took great care of me and didn’t complain once.  I told him to go to sleep but he wouldn’t until I was doing better.

So why am I torturing myself with withdrawal? Well first of all my refill scripts have been lost and my doctor won’t rewrite them.  I don’t know if my fiancé accidentally threw them away or with my Lyme brain I did, but they are nowhere to be found inside my house.  Secondly, I really don’t think that I need them anymore.  Here’s why…

As most of you know I have been fighting Lyme and confections with treatment for the the last 4 plus years.  I was misdiagnosed for 13 years prior to that, suffering with no answers.  I have been through the ringer with treatment.  I’ve tried holistic and natural supplements and nothing has been working to the point where I felt like I was in healing in a very long time. I previously tried a supplement regimen that was making me feel better but I wasn’t getting better.  I was still having stamina issues, pain issues, herxing and the list goes on, but at least I felt better. 

I have been struggling for the last 6 out of 7 months with very severe depression.  My pain had continued to get worse.  I was falling farther and farther down the rabbit hole.  I have also been struggling with what to do in my life as far as treatment goes.  Do I give up? Do I stop antibiotics? Do I try holistic again? “What to do?” became the dominating question that was haunting me every day.  My doctor told me, at the end of May, to take 4-6 weeks off of dosing and let my body heal some.  I decided that in that in that timeframe I was going to do whatever I could to get better without antibiotics, I was throwing my own personal “book “at these things that live inside of me. 

First thing was first, I did a cleanse which helped a little.  Secondly, I got a new tattoo.  Every time I have gotten tattooed, I always have an upswing afterwards and start doing better.  I was trying really to hard to eat better and lose some weight.  I was feeling better.  But then I got a surprise.  A friend of mine introduced me to a new regimen of supplements and products.  I was extremely skeptical.  Last time I tried a new product I did start feeling better but I knew I wasn’t getting better inside. But hell, I was grasping at straws and was willing to try anything that “might” make me better.  That was a month and a half ago.  And now I feel like I am healing.  Not just feeling better but healing and getting better. 

I can shower, for the first time in nearly 10 years without having to sit down and “take a break” and I don’t feel exhausted afterwards to the point where I need to nap.  I have energy again! My mood has improved.  I’m losing the weight that I need to.  My pain is under control (hence weaning myself off of the Nucynta.) My gut has healed. My ticks (mostly my shaking/tremors/twitching) is starting to get better on its own.  My OCD is more manageable.  I’m laughing again.  My good days are far outweighing my bad days.  I finally feel like I am making progress again. 

I’m still at a loss as to what to do with my antibiotics.  I stayed on the supplements but decided to do at least one round of dosing to see if I noticed any difference.  Other than upsetting my stomach and making me sleepy on dosing days, I haven’t seen any difference on antibiotics versus off of them.  So I’m still struggling with what to do. 

Going off of antibiotics all together is scary to me.  They saved my life and without them I would have been dead and gone 3 years ago.  But the results I’m seeing with the new regimen I’m on is undeniable and I want to continue to see how it goes.  I’ve talked to many others who are on the supplements and have had amazing success that goes above what I’ve already experienced (they have been on the supplements longer than I have too.).

As of now my plan is to stay with what I’m doing.  I’m going to talk to my LLMD about putting me on maintenance medications, which is antibiotics only 3 days a month.  That’s what I’ve been striving for for years now.  Maintenance.  Remission.  I finally feel like that’s possible.  Not only do I feel like my Lyme is getting better but so is my Babesia and Bartonella.  I feel like a new person. Don’t get me wrong.  I still have bad days.  After all, I’m still sick and as of now with the medical community not having a cure, I will remain sick for the rest of my life.  I was told when I began treatment to strive to be 80% of what I once was.  I’ve been running at 40-50% percent for years.  Right now I think 80% or higher is possible as long as I keep doing what I’ve been doing and I haven’t even been able to dream that high since I first started treatment and had no idea what I was in for. 

I’m still in the hot, humid waiting room.  I’m starting to get a little sick to my stomach again and I can feel the effects of the weather starting to take its toll on my body.  But I’m sipping on my “pink drink” and still feeling better than I have on any previous dosing cycle. 

Its the little things in life that surprise you.  Just when you think you’re at the end of your rope someone/something ties a knot at the end and helps hoist you back up.  I’m not saying I’ve found the “cure” for me, but I am saying that what I’m doing know is working and so I’m staying with it.  I’ve got a lot coming up with my own wedding that I need to be healthy for. 

Posted in Amen, Antibiotics, Babesia, Babesiosis, bartonella, begging for help, being ok, Being prepared, chronic illness, chronic pain, Coinfections, eat well to be well, faking being ok, Fighter, fighting back, finding your way, food, food matters, Freaks, getting better, go your own way, growing stronger, healing, healing yourself, Help, helping yourself, herxing, holistic, homeopathic, I will get better!, I will win, illness, Immune problems, Immune system, Journey, LBC, LLMD, Lyme, lyme disease, lyme's disease, Medical, Medication Overload, Mycoplasma, No Stamina, obsessive compulsive disorder, OCD, oral medication, oral meds, Pacing yourself, reflection, sick, sick individual, Sleep Deprivation, spoon theory, spoons, staying sane, steps, TBD, TBDs, Team Lymestorm, thankful, the spoon theory, tickborne, tickborne diseases, ticks, Treatment, True love, Uncategorized, unconventional, withdrawl | 5 Comments

Crawling Out

Posted on April 21, 2017 by lymestorm

I haven’t written in a while.  I just couldn’t sit down and focus and frankly, I just didn’t care about life for a while.  I had nothing to write.  My days consisted of laying in bed, watching Netflix, over eating and feeling like the world was ending.  I was in a hole…a deep dark vortex that was devouring my soul.  I was in one of the worst depressions of my life. I couldn’t get motivated to do anything.  I wasn’t even sure I wanted to get better.  What was the point?! I would still be sick and I would still be in treatment.  It seemed never ending.

I’m still not sure how I got out of my depression.  Maybe it was my fiancé begging and pleading with me to keep fighting.  Maybe it was the blue skies outside my window calling to me.  Maybe it was having to take the dog out.  Maybe it was just luck.

But yesterday I realized, when I forced myself to get out of bed, that I was starting to crawl out of my hole.  I did a little weeding, a little power washing (which completely relaxes me and takes me to a happy place), a little laundry.  I did all that despite the fact that my knees were swollen and hurting and my back was killing me, barely allowing me to stand.  I genuinely needed a nap from exhaustion.  I didn’t just want to sleep my life away for a change.

I asked for my doctor to hit me hard with dosing.  I didn’t know how hard it would be and though I was physically prepared for how hard it could be, I was no where close to how bad it would be mentally,  I still have one more cycle left which starts Monday and for the first time I’m actually scared to start dosing.  Just as  I have started to emerge, I’m going to be dragged down into the hole again.  I’m just hoping I’m far enough out to not hit a new all time low. 

Being sick sucks.  What was supposed to take 10-18 months is now entering year 4.  I’ve has so many setbacks and complications that its hard to see the light at the end of the tunnel and know its not a train.  I’m trying not to be frustrated, I’m trying to be compliant and I’m doing my best to keep fighting.  That’s what you have to do when you have a chronic illness, never give up the fight. Most people will never understand that every single day, even the good days, are a battle…me against my mind and body and the disease.  In my darkest hours I need to remember this. Maybe this weekend I’ll take post it notes and place them throughout the house saying “KEEP FIGHTING!” so that when the depression creeps back in during dosing I’ll be my own reminder this time. 

I have always been a fighter. I’ve gone through all of this with my head held high and fought.  This latest protocol for dosing has changed that.  The goal is to attack the Babesia, Bartonella and Lyme as hard as they can and hopefully knock out (or almost out) the co infections.  Most of what’s left is imbedded in my brain which causes the deep depression and makes me completely unpredictable and often angry, unable to drive for periods of time because I’m disoriented and confused and so helpless I can barely take care of myself and the most menial tasks.  I feel like a small child in an adult’s body with adult problems.  I feel overwhelmed.  I can’t keep track of my finances. I can’t hold together a household.  I’m having difficulty hand writing things.  My tremors are back and now my upper body is as bad as my lower body.  I feel like I’m taking a giant step backwards and 2 baby steps forward.

I know this is what I asked for. This was my own doing.  As they say be careful what you wish for because you just might get it. Am I regretting my decision? I really don’t know.  I’m waiting to make my decision until the end of last cycle in this protocol.  If I come out on top then I win, if I fall backwards and start regressing even more then it proved to be too much for my body and brain. Either way I’ll continue to press on.

My biggest concern now is that I’m becoming immune to certain antibiotics, Ceftin in particular. It has been incorporated into the last several protocols.  If I’m becoming immune to the antibiotics that are supposed to save my life what am I to do? If I leave things untreated I’ll just get sicker and sicker again.  If I continue with them, I run the risk of becoming immune to more and more antibiotics and then Heaven forbid I need antibiotics for an infection other than Lyme.

I’m going to talk to my doctor after this last round of the protocol.  I’m going to see if I can take a few months with a minimal protocol and give my body a chance to heal a bit before I slam it hard again.  Maybe I just need time to heal emotionally more than physically.   I have so much going on in life that I need to relax and regain balance in my life to get some control back.  But I need my brain to be working to do that.  So I’ll muddle through the next 2 weeks and see how things go from there.  One foot in front of the other, one day at at a time.  I’m crawling out of the hole and the darkness.

Posted in alone, Antibiotics, Anxiety, Babesia, Babesiosis, bartonella, Being prepared, chronic illness, chronic pain, Coinfections, depression, desperate times, disappointed, Disheartened, emotional, emotions, Exhausted, Exhaustion, Fighter, fighting back, Freaks, germs, getting better, getting worse, healing, helping yourself, highs and lows, hope, I will get better!, I will win, illness, Immune problems, Immune system, Journey, LBC, loneliness, Lyme, lyme disease, lyme's disease, Medical, Medication Overload, Misery, Mycoplasma, No Stamina, obsessive compulsive disorder, OCD, reflection, sick, sick individual, spoon theory, spoons, staying sane, TBD, TBDs, Team Lymestorm, the spoon theory, tickborne, tickborne diseases, ticks, Treatment, Uncategorized, What to expect, Zombie | 1 Comment

Babesia Blues

Posted on February 8, 2017 by lymestorm

I’ve been down in a dark hole for weeks now.  I just finished four months of Babesia treatment.  Four long, rough months.  While I haven’t been physically herxing the mental herxing has been nearly unbearable.  I’ve been all over the place emotionally.  Mostly I am deeply depressed.  Barely able to get out of bed.  If I do, I usually end up just moving from my bed to one of the couches.Even with a new puppy (well she’s actually 3 years old but she’s still my “puppy” considering at 49 lbs she’s half the size of my old dog) I’ve been unable to pull myself out of my own shit and get my life back together.

I feel stuck with my treatment.  When I first started nearly 3 years ago, I was so physically ill I didn’t know how I’d ever survive it.  But despite feeling sick, I knew treatment must be working or else I wouldn’t feel so bad.  Then I started to get better.  I was making noticeable progress.  Even with so many set backs I felt like I was getting better.  Now I just feel stuck.  I’m beginning to wonder it this is as good as its going to get, but I don’t know how I would learn to live with this being my new normal.

After being evaluated by a neurologist (MRIs of the brain and full spine) I received a clean bill of health (at least in that aspect) and was told that ever increasing shaking was a “tic” and that I should see a psychiatrist, which I still haven’t decided if I’m going to do.  (A tic from a tick, you have to see the irony in that.) . I’ve had bad experiences with psychiatrists in the past and I’m afraid they’ll take one look at my medication list and tell me that I’m overmedicated or worse want to put me on even more meds.  Finding a Lyme literate psychiatrist seems like an even more daunting task.  I’m afraid they’ll tell me there’s no such thing as chronic Lyme or my coinfections and that everything is all in my head which will set my Irish temper off.

The shaking is so bad lately.  It has moved from mostly in my legs to full body.  It is so depressing to even go out in public anymore.  I guess if I was older and shook people might write it off as Parkinson’s but since I’m not I get looks of disgust.  It almost looks like I’m going through alcohol withdrawal and I often find myself wondering if that’s what people are thinking when they look at me.  When I get that thought in my head I try to knock it out as quickly as possible because then I want to burst out into tears.  There’s a lot of “talking” to myself reassuring myself that I can’t help it and that its not my fault. I try to joke about the shaking but the truth is that it hurts.  My fiancee tries to understand but he just doesn’t get it.  I just can’t find it funny anymore.  Maybe that’s my depression getting the better of me.

Living with me is becoming increasingly difficult because I am unable to control my emotions anymore.  I never know who I’m going to be or how I’m going to feel anymore.  I am completely emotionally unstable.  I don’t take pleasure in anything I used to and I don’t know how to make it stop.  I feel like I have no purpose anymore.  My fiancee has taken over the chores I used to do to make life easier for me.  I fully appreciate all that he has done for me and continues to do for me.

I have a wedding to plan for which I should be thrilled about and I can barely get myself to do anything about it.  I know what I should be doing and I can’t get anything together.  I can’t focus.  I can’t have conversations I need to have regarding it. I’m trying my best but nothing seems to be coming together and I feel like there’s nothing I can do about it.

I feel like I’m killing time until I see my LLMD again but that’s still two and half weeks away.  I’m hoping for good news from them.  Reassurance that what I’m going through is normal and that things will get better.  But there’s another part of me that’s terrified of hearing “this is it” and its time for maintenance medications for the rest of my life.   I think that would crush me at this point and I definitely wouldn’t be able to get out of bed anymore.  I am also beginning to wonder if my system has become immune to the antibiotics that I’ve been on.  I’ve done so much damage to my body in my quest to get better, I don’t know if I’ll ever recover.  Its not like I had a choice though, the Lyme and coinfections were killing me and if I wouldn’t have treated them, my mom would have buried yet another child.  What else could I have done?!

Maybe if I had more Lymie friends it would help.  Someone who would understand what is going on with me and would have more advice to help. I’m terrible about reaching out to new people.  Its still so hard for me to admit that I can’t handle things, even with those closest to me let alone to people I barely know.  I go to a Lyme support group and for 2 hours once a month I feel somewhat understood but I also feel ignorant about my own disease and how to handle it.  Maybe if I had the money to spend for different treatments but I can barely afford my own doctor and medication to even try to spend more out of pocket that’s not covered by insurance.  I pay $330 a month for insurance that I don’t even get to use because my disease is controversial and isn’t covered by insurance.  What’s the point?!  I’m having to wean myself off my pain medication (which was working and keeping the pain under control) because it now costs me $200 a month.

I’m guessing that all this depression and being trapped inside my own mind is my recovering and/or a side effect from the Babesia treatment.  No Mepron this time so I can’t blame it on that.  I don’t know what I’m doing or where I’m going or how I’m going to feel tomorrow, let alone in a couple of weeks.  I’m just trying to put one foot in front of the other and get through every days that passes.

 

 

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Where I Am Now

Posted on December 13, 2016 by lymestorm

Its just under one month shy of when my world completely changed. January 2014 was a time I will never forget.  I had gotten the flu, my great aunt was in the hospital dying, I was still misdiagnosed with multiple sclerosis (injecting myself daily) and I had never been more sick in my life.  Little did I know things would only get worse.

I left work on January 2nd, 2014 to rush to my great aunt’s side, she died the following morning.  I had taken off of work for a week to deal with funeral planning and the funeral itself with some time to grieve.  She had been like a grandmother to me.  She was also the last of 12 children, the end of an era.  Following the funeral, I began to crash hard.

When I left work on the 2nd, I had every expectation of returning to work, doing a job I very much loved.  I went out of work on the Family Medical Leave Act (FMLA) because my own health had declined so much and so rapidly.  I was dying but I didn’t know it.

So began my fight against time, I had 12 weeks to figure out what was wrong with me and to fix it.  Doctor after doctor.  Diagnosis after diagnosis.  I was running out of time both at work and in life. 

Forward to March of 2014, I found a provider who believed I had Lyme (which I thought I’d had for years) and co infections (which I never heard of.) A month later the answer to my prayers came with a confirmed Lyme diagnosis with 3 co infections (Babesia, Bartonella and Mycoplasma.) With no medical intervention I would have been dead in 10-12 months. 

Since then its been a long, hard and windy road.  I have fought the best I know how to,  by perseverance.  This morning a very close friend told me that I was her hero.  I was completely shocked, amazed and humbled by those words.  And so here I sit reflecting on the last nearly 3 years.  I am a completely different person than I was the day I walked out of work for the last time.  Life changes in a moment.  We never know when our last goodbye will come.  We never know when we will be forever changed and we often never know when we will change someone else’s life. 

My diseases have taken so much from me…family, friends, the ability to work, the ability to take care of myself (for a long time.) I could go on and on about what I have lost and what I miss about my “old” life but I choose to see what this disease has given me and allowed me to become which is worth so much more than I have lost.  I have forged friendships that are unbreakable.  I have gotten back so much of the humanity that I had lost.  I’ve learned to be humble and kind and caring.  This year I think I’ve said “Merry Christmas” to more people than I have in the last 5 years combined.  I want to be the light in this dark world.  I want to shine. 

  Hero is a strong word and even though I still can’t let myself say it about myself, I feel honored to have impacted someone’s life so much.  That was my mission from day one when I started writing…I wanted to help someone, inspire someone, change someone for the good and today I feel as though that finally happened.

Three years have changed me and changed my life completely.  I feel more connected to the world around me, more at peace than I ever have, more comfortable in who I am as a person.  I’m less jaded, softer, kinder, more tolerant (though I still struggle with patience.)

Its been a long three years with more ups and downs than I could have ever anticipated.  Treatment was only supposed to be 18 months but the set backs I’ve had have caused treatment to only continue.  But I think I can finally see some light at the end of tunnel.  Dosing remains difficult for me at time but my highs are higher than they have been in years, the lows not nearly as low as they once were.  I continue to fight and even when I am considered to be in “remission” I know this is a battle I will continue to fight for the rest of my life.  I try not to think about the forever part of it because its overwhelming.  I live one day at at time.  I measure that day on how I feel.  Some days are still captured by the disease, days where I am stuck in bed and feel useless.  But I have days where I feel like I am fairly “normal” again.  Its all about the spoons.  Some days I have more spoons than others.  I’m still pretty bad with borrowing spoons from one day to get through the current day to do the things I want to do.  Some times it leaves me near crippled but I just try to smile through it all.  I want to be the light and not the darkness anymore and the only way I can figure to do that is to smile as much as I can.  Please don’t misunderstand, there are still days where I lay in bed with the blankets pulled up over my head just counting the minutes as they pass, when I’m too sick to do anything and I let the feeling wash over me, I bathe in it and then when I am able to I pick myself back up and move on.  I’ve learned to let go of the resentments and what ifs and the poor pity mes (with rare exception.) Its the only choice I have in all this, my attitude as to how I handle this. 

I’ve talked to a few people over the last couple of days and told them the “hero” story.  My mom put it best, I think.  She told me that if she was in the same situation she would have gotten through it because she had to but she knows she wouldn’t have handled it as well as I have, reaching out to people, having a positive outlook and not only surviving but conquering.  Hearing my mom say that was a real eye opener to me.  Not just as a compliment but as a testament to how much I’ve changed.  I know the “old” me wouldn’t have been as positive. 

Everything happens for a reason (or so they say.) I think I was meant to have my diseases to understand people and myself better.  I think that it was God’s way of teaching me a lesson, albeit it very hard way.  All I can do now it hope that I’ve learned the right lesson, that I’ve made my God proud and that I make those around me proud and to give a little light to the rest of the world.

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Psych Ward : Part 2

Posted on September 26, 2016 by lymestorm

I’ve made a very difficult decision today.  I am going to post my “journal” from my time in the psych ward last year when my ammonia levels where exuberantly high.  No one had ever seen them before today when I shared them with my boyfriend who agreed that I needed to post them.  Some are  phrases or snip its. Others are full thoughts.  I am publishing them so that if someone is struggling or has been down the same path can find something to relate to or something that will resonate with them.  I am publishing them completely unfiltered.  They are as follows:

 

June/July 2015:

“Its just like jail – stainless frigid toilets / in a room / single wide bed, white worn sheets, cream colored walls stained and marked from bad tempers / I eat for the first time all day/ 1 mg of Ativan / Turkey sandwich with Hellman’s mayo / Doctored the way I used to make it for Matt / staff is pleasant / trying to stay calm / Pranyama breathing in Shabasanah / some water / cameras are necessary but make me feel self consciousAnd freak me out / sky blue shirt and pants big enough for two of me/ brought Halestorm lyrics – I AM THE FIRE! ( and the chorus to “Amen”) / must survive somehow/ no plan scares me / I need black and white / No charcoal /  blood shot eyes / Haven’t slept all day and bad nights sleep/ THEY TOOK MY BOBBY PINS – SERIOUSLY! / I’m not crazy / Telling the truth gets you nowhere / People mistake my meaning / Need to eat my Oven Baked Lays before counselor who decides my fate comes in / How do I do yoga and/or meditate while being “monitored” / Dear fellow Lymies this is horrible – I hope you never end up where I am / just notice – plum all behind me / I’m so tired/ thank God they gave me paper to write on and a penice to write with after they took my pen / I put Carl here – is this payback? / Oh well he’s dead – stupid addict / Chair in the corner – grey back and seat on black poles with same grey rubber feet / Is that AC or a speaker with white noise? / Floors seem dirty/ Dart tan with streaks / This whole place feels like filth surrrounding me except for the blinding white light overhead / That son of a bitch keeps me awake / How can it be beneficial to leave someone in my condition alone with their thoughts /

I was a dispatcher for 13 years and in public safett for 16 years. Do they think if I was serious I would tell anyone? Do they think I don’t know a 1000 ways to kill yourself even in THIS room? / Come on! / I’m a smart girl / Yes I think about suicide and even dream of it but its not a viable option! I love my mom and grandma too much! / I might be a horrible non practicing Roman Catholic BUT I still believe for me suicide is a mortal sin – my one way ticket to HELL / I believe in planes of existence but that is one plane I do NOT want to be on / waste of time, resources and space / I can hear crazy outside the door and just down the hall / My back hurts so bad / NO RELIEF EVER / Thoughts are racing / Violation / No matter what boundaries I set and enforce, I keep getting violated / Its a pattern I  can’t breaks/ Going to try to sleep  / Hope the white light’s screaming I can learn to drown out…

I am NOT a pysch patient. I am a sick individual with Lyme, Bartonella and Babesia that is messing with my brain.  I just need a little help to get back on track. This is complete and total bullshit! I’m wasting a bed on someone who really needs it.  Mom is not going to work tomorrow to be available for me.  I told her if she hasn’t heard from me by noon tomorrow to call down and get me out.  I told her to bring Amber and bust me out of here. The longer I’m alone with my thoughts and without intervention or distraction, the worse it is going to get.  I love the movie “Girl Interrupted” but I am not Winona Ryder or an of the girls in that movie! I don’t want to be Jack Nickolson in “One Flew Over the Cuckoo’s Nest” (another one of my faves.) I don’t want to make friends with the crazies and them be smothered to death.

The rise and fall of Jessica L*****.  Look at how much I had accomplished and how far I’ve fallen. But I AM THE FIRE! I AM A PHOENIX! I’m going to rise from the ashes of this and burn brighter than ever before.  I am going to be the me I was destined to be.  This fight is NOT over.  I might now be able to see the light at the end of tunnel just yet and I need to help out of this pit that’s trying to devour me, but some day my story will change others.  I’m gonna fight for health “CARE” not just management.  I want someone to say “because of you I didn’t quit!” I want my life to mean something. So while the next room speaks ebonics, I am learning.  I am learning a lesson to add to my collection, one I will learn and grow from.  I am miserable and alone and still trying to distract myself by writing and dying for a cigarette and wanting to scream “SHUT THE FUCK UP!” I’m hanging in, surviving, fighting. Now if they would give me my night meds so I could sleep.

Nurse just came back finally.  I’m going upstairs and they will give me my meds.  Should be in the next 2 hours.  Two fucking hours!!!! I’m mentally, physically and emotionally exhausted and I still have another eval to go through before sleep and meds.  Of courseI have no idea how long two hours actually is because I have no watch, no clock, no way to tell time at all.  I can see how sane people lose it in psych wards and jails.  I feel like my basic human rights are being violated. Worse yet, for doing the right thing, admitting I need help and being truthful.  No wonder this country is falling apart.  We punish the good and reward the bad.

Crazy Carol and George should be here, not me.  But they just refuse to see their problems AND get to fuck up 2 innocent little girls.  This world is really fucked up!

It was 250 am when I finally made it to the unit.  Sarah was the charge nurse who took  care of getting me into my room and set up.  I knew I knew her – Fire Week ’01 with Jamie.  Her and her twin sister went (can tampons get lost in you? when do goldfish breathe?) Yup that’s them. I did get some meds (no mobic, metoprolol or Xrelto.)

The ward was quiet and cold.  When I got to my room I knew I had a roommate but didn’t see her (Cierra) till this morning. I slept terrible.  Between my night/normal meds, broken sleep, and just being here, I am so exhausted.

They woke us up at 6 am for more bloodwork. Went back to sleep.  Woken for breakfast.  Terrible.  Had a small turkey? patty for protien and tried to eat a cheese omelet (awful!) but couldn’t even finish 1/4 of it.  So I stuck with it and chocked down a banana, with sips of ginger ale. Breakfast gave me an idea of what I’m dealing with in here.  My roommate is the only one younger than I am – she’s 24, pregnant (6 weeks and considering and abortion) and has a 4 year old at home.  Sweet girl and sweet heart but lack of proper education and product of her surroundings.  Not judging, just stating.

I skipped group.  Anxiety is too high and I’m too tired.  Staff couldn’t find my clothes, even made me sift through the washer to check there.  Finally found.

I don’t like that they have men and women interacting together.  Another reason I skipped group.  It makes me uncomfortable.

This is like some great film about crazy except I’m in it and its caught up with the times.  I WANT TO GO HOME! This has not been helpful thus far and waste of time. Its putting more stress on me than I can handle.

Just got a note to call Mom.  Can’t do so until after group is over.  She has to get me out.  Not getting meds for pain even though I was seen by medical already this morning.  This is messing with my body and my head.  Waiting to see psych and therapist.  I’m so afraid of getting sick physically.

I was right – bad idea! ALWAYS go with your gut Jessica! ALWAYS!

Still tired.  Going to lay down before psych comes.  Supposed to be before 11.  I have no idea what time it is but guessing sometime around 10.

 

As you can tell, the ammonia levels were doing a number on my brain. I was discharged around noon the day after I was admitted. It was an extremely traumatic experience for me and it took me over a year to be ready to share with the world.  I hope my experience helps someone else.

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