The Pusher and the Shaman

Sometime around the first of the year I started using Animal Medicine cards to assist me in my healing from Lyme Disease. It was there that I first read the term “shamanic death”. I had heard of shamans before in my spiritual questing. I had the thought that I could sure use a shaman to help me with Lyme Disease. But, how, where, when? Like so many things it seemed like an impossibility.

I suppose this could be a tale about the importance of vocalizing your wants and needs. A short time later I was in the presence of someone who heard my desire and set out to make it a reality. She knew someone who knew a shaman, and not just any shaman, but a shaman who was recovering from Lyme disease.

For at least the last six months, probably longer, I’ve been in the darkest depth of depression. One Saturday I went to visit some relatives I hadn’t seen in a long time. My symptoms were particularly intense that day, like so many days in the last months have been. The act of displaying some semblance of normalcy took all of the energy that I had that day, which was close to zero anyway. It was a perfectly good visit, and I enjoyed the socializing, and the feeling of being around people you share blood with.

It was an hour-long drive home in the dark with my son sleeping in the back seat. When I look back, I see it as raining, but I’m not sure if that is accurate. NPR was on, and playing a segment where they had an author read an excerpt from one of their books. I can’t remember the name, but it was about a homeless man who has regular interactions with the author. The homeless man has a old dog he clings to and frequently inserts himself into current events in the news and tells the story as if he lived it. My memory fails me, but the story came to a sad ending and touched the part of me that feels disconnected from my own family. Soon I was sobbing. It wasn’t just that day, it was everything, all the stressors of the last months, the last years, and the never-ending onslaught of symptoms related to this horrible disease.

That night I decided I was going to take my own life. I planned to do it on my father’s birthday at the end of May. It seemed right somehow, to have a meaningful date, and one that was about a week away, giving me time to “prepare”. There was a desperate cry for help in the middle of all of it, to anyone listening. If something didn’t reveal itself to stop me, I vowed to go through with my plan. I’ve felt suicidal on many occasions during this illness, but this time was different. Having the plan gave me some relief and a direction. I decided to begin clearing objects from my home so the people left behind would not have a bunch of crap to sift through.

The next day when I talked with a friend, I did not try to hide my apathy for all things. I didn’t say much, but she told me later that she heard something in my voice that made her very concerned. She had already given me the shaman’s contact info. But in the place I was in, it was very difficult to make phone calls unless I really had to. I wasn’t capable of helping myself at that point. So she stepped in and made the call for me, and set up a meeting between the shaman and I, and offered to drive and accompany me. I really needed that and I’m so grateful that she did that for me.

About a week later the shaman came to my apartment and did a healing session with me. There have been many more healing sessions since that time, and a host of new herbs. The die-off from the herbs is intense and I am experiencing that everyday now. I am hitting the herbs hard because I am looking forward to the point where the bugs have less of a hold on my body. My shaman has encouraged me in this direction because he knows from experience that if I can kill enough bugs to feel better, it will encourage me to keep going.

Dealing with die-off has been a problem for me since I first began taking bug-killing herbs and antibiotics two years ago. The intensity of the die-off is something I have to be very mindful of. Prior to becoming ill, I had been drug free and a vegetarian for decades. My body was really sensitive and even the smallest dose of a medication would send me into a tail spin. Once I began taking bug-killing drugs and remedies I was about two to three years into the sickness. At that time I was taking multiple drugs everyday. Drugs for pain. Drugs for sleep. Drugs for depression. Drugs for anxiety. I had gotten to the point where there were so many drugs I couldn’t really tell what was helping or not. I felt bad all the time irregardless.

The first herb I tried was Japanese Knotweed. I took one drop and a short time later my pain increased one-thousand fold and I was flat in bed with a migraine that lasted a couple of days. I could tolerate Cryptolepsis and A-BART better, but the most I ever could get up to was about 4 drops once per day. I took Doxy and Tinidazole for about three months and had a weekend where I felt the best I had in years. Two days virtually symptom free. I stopped the antibiotics. Soon, very soon indeed, all symptoms returned. The two days were in February of 2014. I have not had any days like that since that time irregardless of the multiple regimes of antibiotic protocols my LLMD has prescribed.

The first shaman I saw recommended I see another shaman, one who had helped him tremendously. I went to see him and through a process of divination, he prescribed four different herbal combinations to take to help heal my lungs, my depression, my digestion, as well as bug killers. He prescribed one teaspoon of each formulation three times per day. I was apprehensive about taking them and put it off until after a planned trip to see a family member. I was dreading the die off. I’ve always found it hard to put something in my body that was going to make me feel worse than I already did. But finally I gathered the courage and began my first day of one teaspoon three times a day. By the end of the day I was useless. Intense pain everywhere, waves of depression and anxiety linked to no apparent cause, irritability, increased sensitivity to noise and sound to the point of feeling like I needed to be in a sound proof light-proof bubble.

I convinced myself to lower the dosage, although the “pusher” that lives inside of me disagreed. The “pusher” tells me that I’m weak and that’s why I can’t handle the appropriate dose. There have many times when I have abandoned protocols because I’ve been overloaded with symptoms. These events have always been followed by intense punishment from the “pusher” who claims I can’t handle things well enough. I’ve come to see the “pusher” as a manifestation of Lyme brain. When the bugs are being killed they become restless and angry and they attack my most vulnerable points in order for me to stop taking the things that are killing them. Just like any other organism in life, they are programmed for survival.

I discussed this issue with my shaman and some friends and all encouraged me to back off on the dose. What good is a healing regime if it makes you so sick that you cannot participate in your life to any degree? I’ve always been a Type A personality, a “no pain, no gain” type of person. I’ve survived many things by sheer will alone throughout my life. When I was diagnosed with Lyme I wanted it out of my body and I wanted it out fast. I’ve learned the hard way that the way out of Lyme is not a marathon. It’s a very slow mindful walk through a complicated maze with lots of rest stops and u-turns along the way.

So I started up the herbs again and this time I started with a 1/8 teaspoon twice a day. The “pusher” mocked this dose but I persisted. This amount made me plenty sick, but I could feel the rise and fall of the symptoms between doses. After 3-4 days I went up to 1/8 teaspoon three times a day.

A few days later I went up to 1/4 teaspoon three times per day. I found that if I took the first two doses somewhat close together, say at 10 am and 12:30, I could have a few hours in the evening of feeling less overwhelmed by symptoms, before the last dose at bedtime. A few days later I went up to 1/2 teaspoon three times a day. The die-off was intense, but manageable as long as I kept my mind in the right place. I had to remind myself constantly that when I was feeling really sick it was good and normal because it meant I was killing bugs.

My shaman suggested I switch up the bug killing remedies every 1-2 weeks. This is how we deal with Lyme’s ability to quickly identify a bug killer and render itself immune to it in various ways. So after about two weeks I switched to tinctures of various herbs I have picked up along the way. Mainly, I used Cryptolepsis, A-Bart, Cordyceps and Balkai Skullcap. By then the “pusher” mentality had gained a hold. I figured since I had been able to gradually increase the shaman’s herbs I should be able to handle more of these herbs than I had before. So after the first day I went up to about four drops of each 3 times per day. That’s 12 drops of each per day when I had only been able to tolerate four drops per day in the past.

I started to feel very sick very quickly and I was not able to distinguish the rise and fall of the die-off. Suddenly everything was die off with no rests in between. After about four days of this the darkness became overwhelming and I was no longer able to stave off the  thoughts. Soon I was thinking, “I’m never going to get better, nothing is helping, why am I taking these useless medicines made from plants”.

It was only after my shaman suggested it that I was able to allow myself to take a day off from the herbal protocol, and then another. The “pusher” was very active during this time with descriptions of what a loser I was for giving up. On the third day I finally began to feel slightly better. It had been a week so I thought I would switch up the bug killers again and go back to the shamans herbal preparations. I thought that since I had stopped at the dose of 1/2 tsp three times per day that I would be able to start again at that dose. I was wrong. I was again overwhelmed by symptoms and the “pusher” was out in full force chastising me for not being able to handle the dosage. With some encouragement from a friend I was able to again go back to the 1/4 tsp 3 times per day. Now my symptoms, though at times extremely uncomfortable, feel more manageable again. It strikes me now that it doesn’t matter how many times you want to give up, or if you have to quit or back off of a bug killer. What’s important is that you stay in the game of bug killing.

I’ve started taking Bee Pollen several times a day. I think it helps with energy and there are so many healthy properties that it has. I’ve become convinced that the answers to healing from Lyme must come from the same place that Lyme has come from: the earth. This last week I went to a class on using Bee Venom therapy for Lyme disease and soon I will begin this protocol which I know intuitively, in combination with the herbs I am taking, are going to heal my body.

Lyme is a mental, physical, emotional, and spiritual illness. In order to heal and to activate the complete transformation that is available with Lyme disease, we must address all aspects of it. We must take our power back from the medical system and become the leader on our own healthcare teams. We must consider things we may have balked at before. Healing happens from the inside out, not from the outside in.

 

 

 

 

The Beginning, or was it?

Prior to my health decline that began in 2010, I had never experienced any major health problems. I felt like I had a strong immune system because when other people around me were being hit by viruses, I could avoid them with strong mental thinking and herbal preparations. So when I began experiencing symptoms that were initially mild I wasn’t too concerned. But then as time went on and the symptoms became worse and eventually debilitating, I knew that there was something wrong in my body that was causing the suffering. Of all the things that have changed and been turned upside down in the years that have followed, that one thing has remained constant. I’ve always known something was terribly wrong.

Between 2010 and 2012 I saw dozens of doctors trying to get help. They would run a few tests, which would always come back normal and then tell me that there was nothing wrong. They offered me lidocaine injections, physical therapy, and pain medications. When I asked for an MRI they gave me an x-ray and pronounced me as “normal”. I had to see several more doctors to get the MRI. Finally one doctor agreed reluctantly. The MRI of my cervical spine showed disc bulges and cervical stenosis which the spine doctor pronounced as “normal”. I asked to see an Orthopedist. The Dr. agreed reluctantly and told me it was a waste of time. The Orthopedist I saw was the rudest Dr I have ever met. She told me in a condescending manner that she didn’t have a “silver bullet” for me, and that I just needed to go to the gym. I found out later that she wasn’t even an orthopedist, but an ER doc filling in as an orthopedist.

I begged to see a Neurologist, and finally saw a Dr. who was willing to refer me to one. When I got to his office, his manner was dismissive and he seemed confused about why I was in his office and wanted to know how I had gotten the referral. Still searching for what might be wrong with me, I showed him how my scapulas had begun to protrude out of my back and that I had a family history of Facioscapulohumeral muscular dystrophy. He told me he thought that was interesting, but not relevent. After a brief neuro exam he pronounced me normal and sent me on my way.

I finagled my way into another Neurologist’s office. By now I knew there was a genetic test for the muscular dystrophy that afflicted my family. I wanted the test. The neurologist told me that I would need confirmation from my cousin with FSHD which genetic deletion she had. They wanted me to produce her medical records. I called her and she started crying on the phone. The neurologist suggested I try calling another time and getting the info. The Neurologist told me the test was extremely expensive and that she couldn’t order it without knowing my cousin’s results. I didn’t call my cousin to confirm her results because I didn’t want to upset her again. Instead I told the neuro that I had confirmed her results and the Dr. agreed to give me the test.

I showed up at the lab and the receptionist told me that the test my Dr. ordered had to be approved by some gatekeeper high up in the system who only visited the lab once a week or so. Finally I heard from the lab that I could come in for the test. I sat down in the chair and the lab tech drawing my blood said, “You must be very special, this is a very expensive test.” “Really?” I thought but didn’t say aloud. I wasn’t feeling very special at all, in fact I was feeling quite the opposite.

The test came back negative which only provided a limited sense of relief. By this time I had missed several weeks of work due to the debilitating migraines I was experiencing three days per week. If I didn’t have FSH Dystrophy, then what did I have?

 

 

Emotional Complexities of Healing from Lyme

Everyone with Lyme should read this post.

Will There be Cake?

Soooo… I’ve been under a bit of a writer’s block. I’m not even going to pretend I know when my last post was, because I don’t, and I didn’t check. I can give a myriad of excuses, watch me. I’ve been feeling better. I’m in school now. Chemistry requires a lot of homework. I’m getting back into domestic duties. A few siblings are living with us right now and frankly, hanging out with them during free time is more fun than blogging. I’m just more busy these days.

See? But on the other hand, if I’m being honest, a more sinister reason trumps all. I have spent the last handful of months experiencing a very unexpected, very oddly-timed, season of grief.

Those around me for the past few years that I have been sick or in treatment have frequently commended my strength. And it’s true, I did notice during those…

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Dear Yolanda

Dear Yolanda,

I’ve been watching the Real Housewives of Beverly Hills for several years. When you first arrived on the show I was struck by how different you were from the other ladies. The first thing I noticed was that you seemed to be interested in genuine relationships. In spite of the fact that you could easily coast on your beauty and grace alone, you demonstrated substance and integrity in your actions with your husband, your children, and the other women on the show. It was really a different show with you on it. Your values showed through, and not just in a gratuitous charitable fashion. And you have stayed true to your values throughout the show, never taking the lower road like some of the others.

It was difficult to watch your health slowly decline, especially because my journey has paralleled your path. I was diagnosed with Lyme disease in 2014. Many of the things that you have experienced I have experienced also. I can’t tell you how valuable it has been to be able to watch your journey play out, as difficult as it has been. I am so grateful that you have stayed on the show to increase awareness in spite of how challenging it most certainly has been for you. Especially when the other ladies began attacking you and questioning your integrity. So many of us have experienced the criticism and disbelief of others as we struggle to understand an illness that we never asked for and don’t deserve. To watch this play out on the show has been (albeit painful) so validating for me and for many others like me, I’m sure.

I am so grateful for your willingness to be filmed during your devastating ordeal. It demonstrates such courage to show up on camera as you are, without makeup, with your hair imperfect, sometimes grouchy, and angry (rightfully so) at your bitchy accusers. In the plastic world of Beverly Hills, you have shown us what it really means to be real. I can only imagine that staying on the show has been an ordeal. It’s a testament to the love that you so freely give that you have endured the show this long. For Lyme sufferers everywhere, who understand exactly what it takes to “show up” for life while suffering from an illness that many do not understand, you give us hope.

Recently when I watched the episode at the Lyme Gala, I was so proud of you and what you have done. For many Lyme sufferers you may be the only voice they have heard that says, “I understand, I’ve been there too”.

I was sad to hear the news of your divorce, but hopeful that it will assist in your healing. My relationship ended right around the same time as yours. Relationships, as you know, can easily become casualties of Lyme disease.

As we journey together through the thick of this, as days, weeks, months and years have passed, we grieve for who we once were and wonder who we are to become. In those times, when the long night is the darkest, I hope you will remember that what you are doing matters. It matters to me, and it matters to the thousands of other Lyme disease sufferers.

With much love and thanks from all of us, for helping us to feel less alone.

Namasté, Yolanda

Denial

I was having a conversation with a medical receptionist recently. She’s from the East Coast, has a friend who has Lyme, and has been experiencing a decline in her health. She went to her primary care at Kaiser here in the Bay area, and asked about Lyme Disease. She was told that “Lyme disease is a fad, it’s just something everyone thinks they have right now”.

My biggest problem is the opposite. In spite of substantial medical evidence, I go through long periods where I doubt the diagnosis and search frantically for a different explanation for my symptoms. I’ve been doing that for at least the last few months. I have thyroid disease, so I blamed all of my symptoms on that. But after experimenting with different doses of thyroid medication, I now realize that there is a baseline level of sickness and pain that I experience everyday whether my thyroid is stable or not.

I was bitten by a tick. I got sick after the tick bit me. In truth after the tick bit me, it slowly plowed through the rest of my life, flattening everything in its wake. I lost my job, my self-esteem, my professional reputation and my credit rating to Lyme.

The pain is difficult for sure. But the psychiatric effects of Lyme are very debilitating. I’m beginning to notice when I read other Lyme bloggers websites that there is a very characteristic picture of what a brain infected with Lyme acts like. The psychiatric symptoms of late stage Lyme are well documented within the literature, but are not often talked about or acknowledged.

The symptoms are so insidious that most of the time I am completely oblivious that I am experiencing them. I’m not saying that I don’t notice the anxiety, depression, suicidal thoughts, paranoia and depersonalization I experience everyday to varying degrees. But what I don’t often realize is that these symptoms are part of Lyme disease. And when the symptoms intensify during die off it begins to feel like a big psychotic mess. No part of my brain seems to be able to organize itself enough to say,

“You’re missing the big picture here. Biological toxins are affecting every thought and emotion. You’re not going crazy. You’re killing microorganisms that produce endotoxins when they die. It’s the Lyme, not you.”

Lyme disease has a profound affect on your brain and nervous system. But there are external factors as well. When you tell people you have Lyme and they dismiss you, it makes you feel like you are crazy. You know how debilitating your symptoms are. But then you end up in front of a doctor or multiple doctors who imply that you are over exaggerating your suffering. When you tell people about Lyme, and explain the controversy regarding the diagnosis and treatment, their eyebrows begin to rise. They will point you to websites that tell you that LLMD’s are charlatans who have convinced you that you have a disease that does not exist. You start to wonder, is it just me? Who do I trust? What can I rely on?

Two weeks ago I had an appointment with a new neurologist. I’ve seen about a dozen neurologists in the five years that I’ve been ill. My LLMD is also a neurologist. The purpose of the visit was to rule out muscular dystrophy due to my symptoms and because it runs in my family. I’ve seen other neurologists about this but have been dismissed by most. This neurologist did a more thorough exam than his predecessors. It seems most neurologists do whatever their version of the Neuro exam is and if they don’t see anything blatantly wrong (i.e. you are in a wheelchair) you are dismissed. That’s been my experience anyway.

I prepared myself mentally and emotionally for the visit. It’s not uncommon for a bad doctor visit to send me into a death spiral of depression and hopelessness. It doesn’t help that I’ve received much of my care from Stanford, which I always thought was the best there is. And I have had some really good experiences there. But I have seen enough doctors at Stanford to get a feeling about their position on Lyme Disease. To the majority of doctors of Stanford, there’s no such thing as neuro-lyme. When I told my pain management doctor at Stanford (who is amazing) that I had been diagnosed with Lyme disease, he took me seriously and made an appropriate referral to the infectious disease docs. The medical staff called me about the appointment and demanded a copy of my western blot test results before they would make the appointment. By then I already had a LLMD and I wasn’t going to subject myself to their scrutiny.

Many of the doctors I’ve seen do the same thing I’ve been doing recently. Denying that Lyme is real. They pretend not to see it on the medical record. Or when you tell them about it they say a quick “Hmm” and change the subject. Or they will flat-out say that none of my health problems could possibly be related to Lyme disease. I can’t imagine another disease that doctors would treat in such a way. And that’s where the craziness starts. Who am I to claim that I have symptoms from a disease that one of America’s leading health institutions says doesn’t exist?

Often it will be one comment on the part of the doctor that takes me down. Two visits ago, when I went to see a neurologist about my Chiari diagnosis, which mysteriously appeared after I contracted Lyme disease, the doctor said to me, “Has anyone ever tried to figure out why you’re in so much pain?” I’m thinking, has this guy even looked at the electronic medical record? The past four years of my life have been consumed by trying to figure out what’s causing this pain! And each doctor’s opinion, it’s all in the record.

It’s a big problem that I present well, as in people have said I don’t look sick. Prior to becoming ill, I was not the kind of person who ran around looking for sympathy. I learned at a very young age to hide my pain and that process is wired into my nervous system. And I always see these doctors in the morning and after taking a pain pill. The truth is I have to try to plan my day so that I do anything I need to accomplish before 1:00. After that it’s very unpredictable how I’ll be doing. My brain becomes filled with scrambled thoughts and the muscles of my head, neck and upper back and upper arms contract involuntarily causing pain that makes me feel like my muscles are being pulled away from the bone.

Ironically the day after I saw the most recent Doc, I woke up with one of the worst migraines I’ve had in a long time. I think it might have been from moving my shoulders around so much trying to show the Doc how deformed in appearance and function they’ve become. They stick out of my back like wings. Something that also mysteriously appeared after contracting Lyme. I spent too much time telling the doctor about my shoulders and very little about my pain. By the end of the appointment it was clear he thought my concern was about the appearance of my shoulders when he asked me, “But, really how much do you feel the shoulders are interfering with the quality of your life?”

“The pain related to my neck and shoulders is the number one thing affecting the quality of my life,” I told him.

It was too late by then to try to get him to understand the level of my suffering. I think this happened with the other Doc also, because at the end of the visit he suggested I try ibuprofen. The answer at the end of these visits is always the same. There is nothing to be done and they have nothing to add to the diagnostic picture. They all agree I should have another (my third) cervical steroid epidural since they helped relieve my pain for three months the last time.

The day after the visit I got a survey from Stanford asking me in a roundabout way if I thought I needed a pain psychologist. Maybe it was just a coincidence, but it bothered me anyway. Not that therapy isn’t a good thing but just because I began to feel as if their collective opinion was that my symptoms aren’t real.

I left that last visit with gratitude for the wonderful neurologist I do have, who is Lyme-literate and who has treated me at every visit with respect and care. She never dismisses my concerns and always wants to know my perception of what is happening. It makes a huge difference, and I am so lucky to have her.

I don’t want to have Lyme. I don’t want to have a controversial illness that is difficult and costly to treat. I don’t want to be dismissed by doctors and even worse by people who I thought cared about me. I don’t want to have Lyme, and yet, I do.

Lymeaversary

One of the advantages of having a blog, I suppose, is that you have somewhat of a record of your progress. That is, if you don’t have a daily symptom log like my doctor wants me to have. I just read my last post from two months ago and although I can vividly remember feeling that way at the time, I feel much differently now. For instance, I’m not fantasizing about green hoses and carbon monoxide. And I can even see some humor in that and have compassion for myself at the same time. That, and the fact that I am able to write, are literally miracles if I have my perspective on right.

I SO need some kind of external validation that things are on a uphill course, however gradual. Just knowing that things are on some kind of course is helpful. For so long now, until recently, it has just seemed like perpetual suffering. Once you have had Lyme & Co you can say, “Yeah, I have walked through the valley of death”. Has anyone ever said to you, (or have you ever said to yourself), “At least it’s not cancer”? Don’t kid yourself. It’s just as bad as cancer, and in some ways worse.

But hey, lets not get lost in the quicksand of it all. About two months ago, I marked one year of living with a Lyme & Co diagnosis. A lot has changed. I’ve learned a lot. Right now, mentally, I’m not in a bad place. And I’d say that today anyway, things aren’t horrible on the physical side either. Like I mentioned earlier, writing is something I have not been able to do in a long time and here I am doing it. There is a long road ahead, I understand that now. And there is not a magic solution anywhere to be found.

You can’t solve Lyme with your mind, but your mind will tell you that you can. Reading that sentence over and over gives a good example of the state of my mind over the last 5 years of living with chronic illness. Throughout my life, I’ve solved many problems and climbed many mountains with my brain and my ability to do, perform, and accomplish. For the first three years or so, my goal was to return to my prior over-functioning state. With that particular mindset I hit a lot of concrete walls.

I’m not well by any means. There are more tests, doctors and medical crap in my near future. But one of the reasons I’m doing better is that I made a conscious decision to take my health into my own hands. If I am in my body enough and follow my intuition I can often tell what my body needs. I realized I was hyperthyroid, which happens a lot because I have no thyroid gland and my levels fluctuate all over the place on a regular basis. My mental health is really dependent on the proper level of thyroid and I don’t seem to notice that its gone hyper or hypo until its gotten way out of range. Blah, blah blah. Do you ever get tired of talking about your health issues? I do. After awhile it can feel like there is no life left, only illness.

I also decided to stop taking all oral antibiotics and rely only on herbal remedies after I had two experiences with (sorry for the TMI) having burning poop leaking out of my butt. That’s the best way I know how to say that. Lyme disease isn’t pretty, we all know that by now. Lyme & Co have apparently taken up residence in my right jaw, I might have a cavitation there, and now my TMJ joint is dislocated. I’ve been sitting in front of an infrared light I got at the hardware store and I think it helps with all of the head pain and stuffiness I have. Definitely the cheapest Lyme treatment I’ve encountered.

I want to work on my diet. I’ve been good at eliminating all the major offenders like gluten, etc. You know the list. My problem is adding back in. My appetite has been returning a bit lately and I really want to add more vegetables to my diet. I’m the skinniest I’ve ever been in my like a bag of bones. Just in time for Halloween though!

My Lyme Dr had to do a test regarding my mental status yesterday. It was alarming to me to see my brain become blank and literally shut down when asked to perform simple things. My Dr. says that can improve and I am trying to take her word for it because otherwise I will just add it to my already overwhelming worry pile.

Included in my worry pile are my diminishing finances, we all know that goes along with Lyme. There I go again. Back to the quicksand. Don’t want to go there today.

Time for my daily Epsom salt bath, served with a side of dry brushing and a few hits of Red Congolese.

Who cares?

I woke today from a sleep that was restless and full of dreams that shook my body like a boat in a storm. When I turn my head it swooshes like there is an ocean of thick fluid inside it. For what seems like forever now my brain has been at a flat line. There are no periods of feeling a little better. The pain is constant. I asked a friend to keep my son for a few days. I can’t handle the guilt I feel when I’m around him of all the ways I’m failing him.

I’ve been obsessed with suicide for a couple of weeks now. People who know me have known me to be depressed throughout my life so for them it’s just like me being myself. One of my sister’s excused herself from my life a few years ago because she just found it too stressful to be around me. Who could blame her? She likes her life orderly and neat and I’ve never been that.

I opened my computer and read (against my better judgment) a post by some ignorant MD in Montreal about how Lyme disease doesn’t exist. He described the lingering symptoms of Lyme as headache, fatigue, and joint pain. If only that covered my symptoms. I think I could handle those. He said people who have serious lingering symptoms of Lyme usually have some serious underlying disease like Cancer. The article made me really angry and I tried to comment on it but something went wrong. Apparently the universe did not want me to spew my toxic neon green Spirochete all over his pathetic post. Spirochetes aren’t real to him anyway, more like something out of a Dr. Seuss book.

It doesn’t help that the people I once called family share his opinion. They think I’ve convinced myself I have some strange disease so that I no longer have to work. They bemoan my fall from a professional career person to a bed ridden piece of crap. “She’s always exaggerated,” they say. I read about others who have Lyme whose families are steadfastly supporting them, and I wish that I had that.

The people who loved and supported me in my family are dead. I don’t know what they say about me. Sometimes I think they are rooting for me, other times I just feel silence. Dead silence.

I went into my therapist’s office last week with a list of things we would not be discussing. It included hospitalization (if I need to be hospitalized I’ll do it myself), whether or not I was sure my relationship is over (1000 times yes), whether I am eating or drinking (enough to stay alive) whether I am taking my meds (yes, the ones the insurance company substituted that do nothing for my suicidality), and the worst one of all “What are the doctors doing and what do they think is wrong?”

One of my Dr’s doesn’t even believe in Lyme disease. She diagnosed me as having Hashimoto’s thyroiditis, and recommended I have my thyroid gland removed (worst decision of my life). It’s ironic, she’s tested me dozens of times for Hashimoto’s, and I’ve never shown a positive result. I was diagnosed positive with Lyme via a blood test but to her chronic Lyme doesn’t exist.  But don’t tell me to fire her. She provides me with pain meds I need desperately and as you probably know if you have chronic pain, most Dr’s these days would prefer their patients take ibuprofen than to have to deal with the regulations the government has imposed on them for trying to provide pain relief to their patients who really need it.

Last week I was thinking of a garden hose and an exhaust pipe. It turns out with today’s modern automobiles it just doesn’t work the way it used to.

I went to an Indigo Girls concert last week. I’d bought the tickets when I was feeling better and shall we say, more optimistic. I’m glad I went, and for a little while I was able to get outside of my death mission brain.

Right before the concert I had to go to the bathroom. I went looking for the closest one and found a disabled person’s one near where I was sitting. No one was using it and I tentatively walked in. I despise the term disabled but according to my insurance company I am. Most people don’t believe it, but I can’t work right now. I’m a psychotherapist and for two years of my illness I did my best to sit upright listening to patients trying not to squirm in my chair because of how much pain I was in. I never wanted them to think I wasn’t listening or that my discomfort was taking precedence over their problems. I took my role as therapist very seriously and considered it my life’s calling.

I digress. I was about to go into the bathroom when a woman with a walker came storming into the bathroom. She looked at me dubiously. “Do you need a handicapped bathroom?” She demanded.

“Not as much as you do,” I said squeamishly.

“Good,” she said pushing in front of me. “I need the raised toilet.”

I was standing there, sort of immobilized, feeling like a fraud, waiting for her to finish. She turned to me before she shut the door. “There are other bathrooms down the hill,” she said plainly.

I left the bathroom and began to walk down the hill. There were two gay men right outside the door who seemed to have witnessed my shameful dismissal from the bathroom. They both looked at me with disdain.

A couple of weeks ago I had two Ketamine infusions from the Dr. who thinks I have Hashimoto’s. I’ve had really good success with them in the past, often lifting the depression enough so that I could think clearly and have some perspective about this illness and this life I am living. They’re expensive, the total was over $600 and none was covered by insurance. I used the last credit card that had any room on it to pay for it. Instead of providing relief it just unleashed a barrage of unrelenting suicidal thoughts.

My partner and I are broken up now but still living together until she finds another place. This is the most putrid purgatory I have lived in for a long time. I dread her coming home each day. I keep thinking I need to sit down and write about why we are breaking up. But truthfully I can’t even remember. I don’t have the ability to give you some logical list of reasons why we are ending. I know that she’s hurt me in a thousand ways I can’t explain. Mostly I blame myself. I tell myself sometimes that we are breaking up because she is not who I thought she was in the beginning. But I don’t think that’s true. I think she is exactly who she was when I met her but that I chose to overlook the parts that were not compatible with me. At first I spoke up about those things but when that became too much effort I just went silent and learned how to keep the peace. I learned that she didn’t really enjoy hearing about things I thought about. I overlooked her “small untruths”. I allowed her to come between me and my son and I sat back and watched while she treated my son unfairly. I subjugated myself. So if anyone has a problem here, it’s me. Because the relationship was working out just fine for her, or at least that’s what she said.

The only person that can save myself from all of this is me, and I don’t have any faith in that person anymore.

My Personal Treatment Plan

When Life Gives You Lyme

I believe in holistic healing of our BODY, MIND and SPIRIT. A delicate balance exists between these three aspects of “self.” When one is compromised the other two follow suit. That’s why it is of utmost importance that we address our overallwellness. Swallowing some antibiotics may give us some relief in the short-term, but will not offer total and complete healing. Lyme forces us to our knees, but it also offers us the opportunity to grow and re-examine the way we were living before illness struck.

I, for one, was moving at about 90 miles an hour through life. I would push myself in my job, in my studies and in my personal life. I thought that taking time for myself meant zoning out in front of the television while eating unhealthy treats to numb the stress. Self-esteem played a part too. I would push myself with voices of self-doubt and self-deprication in order to…

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Purple Unicorns

No one can tell you what healing will feel like. But you will know when it happens.
Me, Lyme Survivor? 4/19/2015

I often jot down thoughts in text messages to myself, post-it notes scattered around my desk, and scraps of paper stuffed in my purse. I came across this one written above yesterday. I remember the day I wrote it very clearly. I had been diagnosed with Lyme in July of last year and had been taking antibiotics for about four months. I was out of bed, dressed, even wearing makeup for the first time in months. And I had begun to notice something profound was changing in my body. There was no mistaking it. I was healing. I felt as if the Lyme was beginning to recede. My partner noticed it too. That day she looked at me and said, “Your eyes are gleaming”.

I felt so good that I posted a picture of myself unabashedly as evidence, or proof of life. Over a period of about a month I had about four really good days, the best days I have had in two years. I had hope that I could one day return to work. And I was excited by the possibility. My doctor was excited. We agreed together that I could stop taking the antibiotics and start treating with herbs alone. This decision was made because the antibiotics were making me feeling really crappy. We were pulsing them, first five days on two days off. The two days off the antibiotics I had symptom improvement. But it seemed that it got to the point where I wasn’t recovering well on the weekends from the symptoms created by the antibiotics. So then we went to four days on three days off.

When things take a turn for the worse, I always find a way to blame myself. And things did take a turn for the worse after I stopped the antibiotics. It was gradual at first and I kept trying to deny it was happening. Internally I had a dialogue going that I probably didn’t have Lyme disease anyway. This dialogue has been going on since I was diagnosed and continues to undermine my healing on a regular basis. I continued with the herbals but a part of me just didn’t feel like the herbs were strong enough to kill what was ailing me. About a month ago things got really bad again and have stayed that way.

Now when I look back at it I blame myself for stopping the antibiotics. Those few days of wellness, so precious, started up the engine of my over-achieving, pushing, impatient, angry prior version of myself. “I’m done being a sick person,” it said. “It’s time to get back into the flow, the fast lane of life”. That place I lived for most of my life until I was too sick to do so any longer. This prior version of Me.1 has a very dim view of me and my “emotional issues”. “Stop wallowing,” it says. It decided I was done with doctors, medicines, surgeries and everything else. “You’re not sick anymore if you are able to feel good on some days,” it said.

Whenever I am feeling really bad, and getting worse, my mind starts frantically searching for what is wrong and how I can fix it. Then there are the days when my mind is too scrambled to even follow logical thoughts. I feel as though I am squinting through brain fog trying to find my way, pacing our apartment from room to room and never remembering why I am there. Sometimes at night I will close my eyes and open them and not recognize my surroundings. I am filled with guilt and shame for my lack of ability to perform the simplest of tasks.

I stopped taking the antibiotics on May 7 and continued the herbal treatments. At the same time I started seeing a osteopath who was working on my body to try to re-establish movement throughout my cranial bones and spine. It felt good when she was working on me but after the visits I would have increased pain throughout my body that didn’t seem to lessen before the next visit. The good days stopped coming. For awhile I was able to stay in denial about it. I was thinking, “I’m not going to let this take me down, I’m not going to get worse just because I stopped the antibiotics”. I was trying very hard to keep my mind out of the dark places. By the 13th of May, I was feeling significantly worse all around. Pain increased, fatigue increased, brain fog, easily overwhelmed, extreme sensitivity to light and sound (had to keep the drapes closed during the day). The sound of the TV, or water rushing into the sink made me want to scream out in pain. For awhile I was red-hot angry without knowing why. The cicadas were back in my head buzzing like it was high mating season. I also noticed that my hands started shaking again, and it became difficult to do fine motor tasks. This combined with shoulder and arm weakness made it difficult to open things or lift even small things. Then I began to feel the old depression kicking in and I became lethargic and apathetic.

There was another possible answer to my declining condition other than stopping the antibiotics. When I was first diagnosed with Lyme the practitioner I saw recommended a hormone replacement called the Wiley protocol. I had used it for a few months in the last year and then stopped when I started to feel really bad and suspected the hormones. I did some research at the time and found that the science behind the Wiley protocol was severely lacking. A few months had passed, and I had forgotten why I had stopped taking them before. I started them up again because I felt like I needed some kind of hormone replacement since my periods stopped when I had my thyroidectomy. I just want to reiterate that with the cognitive problems I’ve had I completely forgot my prior concerns. So by this time, when I had been off the antibiotics for a couple of weeks, I had been using the Wiley protocol again for about 2-3 months.

In my pursuit of trying to figure out why I was feeling so awful I delved back into the Wiley protocol research and found a site dedicated to women who have taken the Wiley protocol and have gotten incredibly sick from it. The problem with the Wiley protocol is the dosing. The doses are set to mimic the hormones of a twenty year old. So as a result when you take them you have the potential of overdosing on the hormones. Unfortunately the hormones are stored in your body fat so it takes a long time to get rid of them. I stopped the hormones right away after reading about progesterone dominance on the website I found. I had every symptom listed there. I stopped the hormones and all of the symptoms started to improve right away but extremely slowly. I’ve been off of them for about two weeks now.

My mouth has been giving me problems for at least a year. The Dr. and I both thought it was thrush which we have treated with diet and medications with little improvement. My tongue always feels sore and swollen and it often looks orange and hairy. My mouth is always really dry. It really affects my desire to eat and my overall well-being. I developed a parotid cyst and when I went to have it checked out they tested me for Sjogrens, which it turns out I have. It was a blow to receive yet another diagnosis and an autoimmune one at that. And it turns out that a lot of people with Sjogrens also have other more severe autoimmune disorders like Lupus. So now I’ve been thinking I probably have Lupus because I’ve had other symptoms related to it. We are still in the process of finding that out. Another Dr. referral, more tests.

There have been other situations muddling up the picture, things that are eating away at me inside. A few weeks ago I had to go through the disability inquisition that my long-term disability company puts me through every few months. They required that I apply for Social security disability as well so I had both entity’s crawling up my ass demanding records from every doctor I’ve seen, and long arduous papers filled out, which has to be one of the most difficult things for me to do. Plus this process always brings up the old judgment thoughts I had when I began to get sick and was still working. To my colleagues, I was just someone trying to get out of work. More than one of them even commented to me about how I was being a “slacker”. Every time I have to go through this “Prove you are still disabled” process,” it brings up all those feelings again. Not to mention I have a huge resistance to the term “disabled”.

Several weeks ago I saw a TV show about people who follow presumed disabled people around and take pictures of them doing things that make them look non-disabled for insurance companies. Ever since then I have been looking over my shoulder. What if someone takes a picture of me doing something that I may not be prepared to do but that I’m doing because there is no one else to do it for me? Like carrying groceries up the stairs or sitting through one of my son’s baseball games while I writhe in agony and try to keep a straight face? It’s made me paranoid, which is also influenced by my thyroid hormones and the Lyme. I’ve gotten to the point now where I don’t want to leave the house. Not just for fear of some insurance person taking my picture but also because I feel as if I don’t want anyone to see me. Not my neighbors, not strangers in the grocery store. If I’m forced to go out for some reason I keep my head down.

Another thing that has been going on “behind the scenes” is that during the time I was feeling better and my heart was open I contacted a friend that I haven’t spoken to in about 8 years. We were once very close and she attended the birth of my son. But soon after there were problems in our relationship and we grew apart and eventually just didn’t contact each other anymore. It was a big surprise for her to hear from me and she responded very warmly. It was nice to talk to someone who has known me for so long, especially because my identity has been so deconstructed. We texted for a bit and then I felt like she was indicating in her texts that she had a lot on her plate and needed to be tending to it. She indicated that she would love to talk and catch up and that as soon as things cleared up in her life she would call me and we could talk. She’s a big emoji user so her texts were full of hearts, smiley faces and purple unicorns. Well, perhaps you can see where this is going. I never heard from her again.

During our first conversation, not far in, she had asked me, “So,……are you sober?” She and I met in 12-step community some thirty years ago. When our friendship deteriorated it was my opinion that her words and actions weren’t matching up. For instance, we were supposed to be best friends. I was going through a really difficult time in my life, and she wasn’t able to show up for me like I wanted her to, like perhaps, I had shown up for her throughout our relationship. When I tried to share my feelings with her she used her 12-step program as a demonstration of her right actions and accused me of not using 12-step principles. I think she said something like, “I’ve used the steps and taken my inventory to figure out my part in this, have you?” I wasn’t attending 12-step at the time. It seems to be a common misconception in 12-step that people who are not attending 12-step meetings couldn’t possibly be involved in self-reflection or be on some sort of spiritual path. I went to AA religiously for 10 years and then moved on to other spiritual paths. But at the time of our conflict I was still sober, and to some degree I still am as I have not had a drink in over thirty years.

But in 12 step terms I am not sober. And so this is what I told my friend. I told her I have Lyme disease, and severe chronic pain that requires me to use Vicodin and cannabis daily. She said some things about it being cool with her, that she doesn’t judge. The conversation certainly stirred up my own self judgment. To 12 -steppers, I am not sober and therefore, I am not living a legitimate life.

And in the middle of all of this, my partner and I have been attending counseling sessions. I don’t feel optimistic at this time about our ability to resolve our differences. I sometimes think that the stress that comes from my relationship would be relieved if we were to break up. I don’t know if this is just a product of my current diseased brain or the truth. One thing is certain throughout my life. I have agonized about every relationship I’ve been in and waited a long time to leave out of fear of making the wrong choice. And now when I look back, it was always the right choice to leave every single one of those relationships! But I can’t even imagine a separation and a move on top of everything else, let alone how I will support myself on my monthly disability allotment. And with that comes more negative self thought.

It seems there is no limit to the number of ways I can judge and demonstrate a lack of compassion for myself. Everyday I seem to be on the firing line of my own thoughts, dredged up from the muck of all of my perceived failures. And then to finish myself off, I invite all of the people who I suspect have a critical view of myself into my mind and make their opinion of me my own. Added to this is the belief that comes up again and again that if I am sick and continue to get worse it must be because I deserve it. Because no one around me in my life that I see on a regular basis is going through the hell that I am. This illness has left me feeling like I’m living on the sidelines of life. Everyday, I watch as the mostly well go by like people on a moving sidewalk at the airport. They are going to work, planning the future, buying things, and most important of all, they can stay standing and still function after 3:00 everyday. Many of their problems seem petty to me. I feel guilty for admitting that.

Two years ago we moved to the community we now live in because it was close to the city and had the best schools around. The apartment also has an awesome view. We live on one of the few roads in town that has apartments, and barely affordable ones at that. This has to be the wealthiest area I have ever lived in. My son is thriving in the school here, although he often asks if we can join the country club his friends go to (not right now honey). I see the extreme wealth all around me everyday and I use it as one more reason to feel separate. And I’m jealous. I’m jealous of people who are able to work, who don’t have to manage pain and illness everyday, and who don’t have to worry about being thousands of dollars in debt everyday with a fixed income that does not meet monthly expenses.

I don’t want to end this post without acknowledging that writing this has helped me tremendously. It’s only the tip of the iceberg but writing it helped me to see it from the outside and made me consider ways that it could change. It’s helped me as much as a really long talk with one of my very best friends, of whom I am lucky enough to have several.

Thank you for sharing this wickedly hard journey with me.