Retrieving my soul

I am out on the road in the Southwest, chasing rainbows and lightening. I've caught some of both. The sky here is so incredible that at times it is hard for me to grasp the enormity of it's beauty. I am really drawn to native american teachings and beliefs. I always have been. When I was a child, I used to make little spirit bowls and gather rocks, gems and feathers to fill them with. I would give them away as gifts. There is Indian blood running through my veins and certainly through my heart. I have been really intrigued by the Hopi tribe recently and wanted to just get my feet on the Hopi earth and breathe in the air here. Since, I also am long overdue to visit family in Arizona, I took the opportunity to do both. My family sent me a stand-by ticket and I headed out here to get away for a little bit. My joints are thanking me. The heat and dryness are having a positive affect on them I think. I wish my muscles and head would catch up. The air travel was a little rough, I must admit. Thankfully, I arrived in Phoenix and went immediately to my family's home where I was able to rest for a couple of days before getting in the car and traveling to the reservation.

I had been thinking quite a bit about all of the pieces of me that are still out there and for what reasons. Some of those pieces linger because of trauma and genuine sorrow and pain. But, other pieces stayed behind for no better reason than just ego. It's amazing what can shift when you just set the intent to heal. After my last blog, I really started to put thought into action. I reached out to a friend that I had a falling out with. And, some major repair was done with someone I have spent a lot of time energetically engaged with in a negative way, even though we don't know each other well personally. That was great. But, I also did something I thought I would never do. And, it was a biggie.

For almost the entirety of my life, I have been desperately afraid of my birth father. Rightfully so, considering the content of my memories and of the file sitting on the shelves of Orange County Social Services. This man has made me question the concept that all people are good at their core. I have had panic attacks in public places when I just thought I saw him. I have had more nightmares than I can possibly count about him. When I was a child, my parents (adoptive) had to sleep with their door open because of my night terrors. Years I have spent in therapy dealing with these memories and nightmares. The last couple of years I have found myself incredibly frustrated over the fact that I have done so much 'work' around these issues and still they have a major impact on my life. I stopped defining myself by my traumas awhile ago and came to a place of gratitude. I genuinely feel a deep sense of gratitude for what happened. This is because the things I did like about myself seem to be in direct relation to the trauma and pain I suffered. It created empathy, a need to want to make a difference in people's life, and opened my eyes to the larger truths in life. I believe those experiences are the reason I do the hospice work and want to help children and animals. So, for all of that, I am grateful. After some major work around my abuse issues the past year, I finally had come to a place in my life that the nightmares around my birth father had subsided. I stopped defining myself by my past traumas and started defining myself by my ability to overcome them. I still maintained vehemently though that I would never meet my birth father. That changed on Monday when I realized he still held a piece of me. Since reuniting with my birth sister I was afraid that he may just show up when we were hanging out. I carried Mace in my purse in case this happened. I didn't want to be surprised by him. He still held some power over me in this way. So, I decided if I was the one to initiate the meeting, that would empower me. I also had a feeling that if I could just see the "monster" with my own eyes and face him that I wouldn't be afraid anymore. I've been reading about the power of forgiveness and saw an amazing documentary on the science of forgiveness last week. I knew in my heart I needed to go beyond just saying I forgave him and do so with the whole of my being. I figure if Elie Weisel can forgive the nazi germans, I can certainly forgive my abusive father. So, I did so in person on Thursday.

We met at Denny's in a town outside of Phoenix. I felt like I would vomit during the ride over, but my sister calmed me with her gentle understanding and we made it to the diner to find him standing out front. He wore tattered clothing and a Vietnam Veterans baseball cap. He gave me a print out of a dog's prayer that he happened to be carrying in his pocket. He was far older in appearance than in years. My "monster' turned out to be a very aged, fragile man beaten down by his own demons. He shook with happiness and nervousness at the sight of me. He told me he had been waiting for 29 years to see me again and tears filled his broken eyes. I had walked firmly through my fear to discover no fear was there at all. In fact, he seemed to be the one who was in fear. And, my inclination was to assure him that fear is only the beginning of freedom and we need not be consumed by it (as I have been taught). He was easily distracted, seemed to constantly be looking over his shoulder and could hardly sit still. His explanations for the circumstance of my time in foster care and becoming a ward of the state didn't feel accurate in my gut, but it didn't matter. None of that mattered. It was his story, not mine. At one point the topic of the heart came up. Very apropos. First it came up as just the physical heart. He told me he didn't understand why people thought the heart was on the left side, because really it was in the middle of your chest. As he said this, his head and eyes dropped and he said, "I wonder though, if I have a heart at all". He went on to talk about being in the Vietnam war, what he did there, what it was like to come home and be called a baby killer, and of all the horrible things he had done in his life. It is one thing to understand the concept of forgiveness, but it is another thing to be blessed enough to be in a position to practice it with the full capacity of the heart. I told him that he absolutely has a heart. We all do. I told him that even though he has done things that are dark, that he deserves to be able to change, to be loved and that he can forgive himself for these things. He said with a sadness I cannot adequately describe, "that is the hard part". I responded simply by explaining that it may be difficult, but it is not impossible. And, then I had the chance to tell him what my soul so desperately needed to say. That is, "I forgive you, now it's your turn". I felt the piece I had been missing replace and reposition itself directly back into my center. Years healed in that moment.

We went to his house, a mobile home in the middle of a desert trailer park. He showed me pictures of him as a boy and of his parents. I saw myself in the eyes of his mother. The pictures of a big eyed boy stared back at me in black and white. No monster. Only a child who's life was to bring abuse and war and slowly take all of his pieces away. That is why, I believe, he went on to perpetuate the cycle of abuse. I saw the history of his father and his father's father and could feel the ancestral line of perpetuating abuse. I saw vividly in my mind my great grandfather, an Apache indian, and his warrior nature. And, I realized how powerful a moment this was. I was there to stop the cycle. Here, with me, the cycle stops. I refuse to allow it to pass through me. So, I turned around and mirrored to him through forgiveness that he too can change abuse to compassion. I felt the profound resonance of the quote "To forgive is to set a prisoner free and realize that the prisoner was you." I was free. There is so much power in being able to love the monster anyway. I believe monsters are only monsters because they lack love. Love heals. With love, the monsters will slowly stop being monsters. Love really is the answer.

I knew that I needed to leave within a short period of time and that I was not going to give him my contact information. This was simply to forgive and face my fears. I said goodbye feeling tenderness, compassion and hope for the person I had blamed so much pain in my life on. I left feeling lighter. Before I left the trailer park, I thanked the beautiful cats that he keeps as pets for loving him. I thanked them because I saw that they and my sister had been the only things keeping any gentleness alive in his heart. Although I felt/feel a significant amount of sorrow for him, I refuse to carry it. It is not mine. I carried his stuff around for years. So, no more. I realized that with this piece back and the power of forgiveness, I have that much more to heal myself with. I do not want to harbor the negative anymore. Lyme, you're next. And, I have more to fight you with now.

So here I stand on Hopi ground, which feels quite cathartic. The Apache were the fierce warriors and their blood is in my veins. The Hopi are the peaceful tribe, and I carry them in my heart and their teachings in the practice of evolving my heart.

Humpty Dumpty Ramblings

Healing is certainly the theme in my life right now. I realize how much "compartmentalizing" has served and hurt me. For years, all the issues in my body seemed to be compartmentalized. I would go to one doctor to try and figure out the excessive bleeding, tumors, night sweats, sadness, endometriosis, and abdominal pain. I would go to another doctor for the problems with my feet. And, another doctor for the neck and back pain. And, a psychiatrist for the panic attacks and depression. And, another doctor when I had a flu or cold. And, it goes on and on. It never occurred to me that all these things could be related to the same issue in my body. I often thought it could be that I was just broken or crazy, but it never occurred to me everything could be a result of the same culprit. This compartmentalization (along with the misgivings of our system obviously) kept me from a proper diagnosis. Now that I know the truth, I can go about treating my whole body, instead of trying to treat pieces separately. And, now that I have begun to treat my body as a whole, I'm seeing that healing is a more than just healing your body. I believe it is healing yourself. The mind, body and spirit. I have always had a spiritual side and have searched for truth and answers. It seems like this would be obvious to me already. But, when this illness seemed to get so out of control, I started looking at it as purely physical.

I was talking with a friend of mine the other day who is battling a pretty brutal cancer. He has been through the chemo therapy and treatment already and the cancer has returned. We were sharing stories of mis-diagnosis, mis-informed doctors, pharmaceuticals, etc. At some point in our conversation, it shifted to talking about the need for a more whole-person healing plan. We talked about the healing that needs to take place inside oneself on an emotional or spiritual level as well, so that you can take to treatment and heal completely. Yes cancer is real, yes Lyme is real, but there are other factors that go into healing any chronic or complex illnesses. I was listening to a CD of Carolyn Myss, author of "Anatomy of the Spirit" the other day. She was talking about the way emotion and pain can affect us on a cellular level. It's a fact that these things can actually have an effect on our immune systems. I wonder if it's these things that can sometimes be responsible for the reason why one person can heal and another person can't. The truth is that we don't know. We really don't know. So, I want to go about healing myself on all levels. To let go of any pain I may have unconsciously hung onto along the way. Even if it doesn't have any affect on my Lyme disease treatment, I believe it's important work. I'm discovering places of old hurt that I thought were resolved, that I can still see traces of. Carolyn Myss discussed the idea that we leave little energetic bits of ourselves along the way in our lives. I began to imagine us as walking puzzles. We lose puzzle pieces along the way for many reasons. The places of hurt in our lives still actually hold these pieces of us, until we heal them. If we go back to these places and reclaim the energy through forgiveness or understanding, I believe we can get those pieces back. I believe we have the power to reclaim what we've 'lost'. Or, maybe it is just that we need to shift our perspective of an experience. I can look back in my life on very painful times and see now how much those times actually served me. When we are chronically ill especially, we need all our energy. Old anger or sadness can be so toxic.

Carolynn Myss also discussed the fact that not all illness is negative. Sometimes it's a chance to heal, reclaim or reinvent oneself, or possibly even a calling to be of service on a greater level. There are major foundations built in the memory of someone who passed from a disease, many books written to assist others going through a disease the author has healed from, and many people who believe their illness or their "bottom" is what inspired them to live a better life. I find great comfort in this. There is certainly something to be said about 'the wounded healer'. She also spoke about the need to be really healthy on a spiritual level to live a fulfilled life. I began to blame myself again for my illness as she was discussing this. The idea that we have the power to heal ourselves means that I've done something wrong, I thought. But, then she pointed out that a person can live a very healthy life confined to a wheelchair. It doesn't mean we are responsible for our illnesses, it means we have the ability to grow in spite of an illness. We can use the power of transmutation to get through. Lyme disease is icky. I can let it take me, get caught up in the idea of being ill and just BE ill. Or, I can use the time to look at what I can do to change my experience within the disease. How can I turn this into something positive? I have noticed that there are people who get lost in or defined by their illness. I see there is power for some there. I don't want to be caught in the trap of staying ill. I think that is exactly where someone can stay if they aren't willing to look at the whole picture. I also believe some people die or are crippled by a disease without being defined by that disease. In order to transmute this experience, I am going to need all my pieces.

All the king's horses and all the king's men couldn't put Humpty back together again.

I can take all of the medications and do all of the treatments and listen to all the opinions out there. But, unless I want to put myself back together again, I'll stay broken for sure. I suppose Humpty Dumpty had the same problem. Maybe he needed to help put himself back together again....

HIPPA - What a joke. Let them look.

Lots of ups and downs these days. My body seems to have it's own consciousness and I often feel like I am observing rather than participating in it's endeavors. I'm trying to stay out of judgement when I twitch, shake, stutter or fall. But, I do find myself embarrassed, feeling guilty or weird. I don't know why, but I do. I feel like I should be able to stop it, even when I know that I can't. When I'm having spasms, I tense up and try to stop it and then I find myself even more exhausted when they've passed. I'm working on letting go and trying to go with it and let it ride out. Last week I went to the boardwalk with some friends. As we were walking in to the park, I started to have "an episode". I was sort of bobbing up and down and shaking back and forth. It's hard to explain in words, but it's not exactly cute and people can't help but stare I'm sure. I was feeling slightly embarrassed and wondering if maybe it would have been better had I stayed home, when my friends 'joined in'. They started dancing with similar movements to mine and making beat boxing noises. It was so funny and instantly brought me out of the negative and into a positive, loving place. How lucky am I to have friends like that? It was no big deal and when it passed, we walked into the park, rode the rides and had fun. I struggled during parts of the day and was really tired after, but it was worth it. I am finding that I am able to do more. I spend lots of time in bed after, but I am feeling some progress. I have no doubt, I will eventually be on the other side of this, healthier and wiser. I know my life has been significantly and permanently changed by this, but I have faith.

My little deck garden

I've been gardening and painting lately as I have the energy. I love it. I'm finding the need to create beauty, to plant seeds, to do things that make my surroundings happier these days. I noticed myself feeling frustrated because I wanted the seeds I planted to sprout faster! How funny. That's often how I feel about my health and this healing process. I want it to happen overnight. I get frustrated when it doesn't happen that way. It takes time, energy, care and patience. I am learning patience. I'm learning to be gentle with myself. I am learning how to heal. It isn't always easy.

My latest painting (still in progress)

I received a phone call today that was odd and a little startling. One of my doctors called to let me know that they had received a call from the Monterey County Public Health Department requesting copies of all of my records. The assistant at my doctor's office was confused. She said they told her it was required because of my positive Lyme test. She then asked me if I used to work for them. I explained to her that I hadn't, that I wasn't sure why they'd be needing my medical records and that I hadn't authorized my records to be released to anyone. She assured me that she wouldn't be sending the records and that she thought the request was strange. I hung up and immediately felt fear. Since I'm aware of the political controversy and mis-education surrounding Lyme disease, I assumed this was a negative thing. I felt defensive and attacked. I called the Monterey County Public Health Department myself to investigate. I was put on hold several times before being transferred to a woman who actually knew what I was talking about. She explained to me that since Lyme disease is a communicable disease, the agency was collecting information for community statistics. I told her that I didn't understand why she needed my full medical records, because they clearly already had a copy of my positive Lyme blood-test. Why wouldn't that be enough for their statistics? She explained that they are putting together data and charting the symptoms, blood tests and clinical criteria of Lyme positive patients. They do this for any communicable diseases, as they are considered a public health risk. Since Lyme is a vector borne disease and can be contracted from something in our environment, it applies. Other examples would be diseases that can be transmitted from human to human or animal to human ( Chickenpox, TB, Hepatitis, West Nile, Rabies, Whooping Cough... to name a few). Ugh, I couldn't help but feel dirty and gross. All of this hassle from a stupid tick. A tiny tick. I can't have children, I can't live my life normally, I can't have my privacy, the normal rules just don't apply to me. From a little bug. It's mind boggling. I felt they had the information that they really needed and it made me feel incredibly uncomfortable, so I told her that I wasn't authorizing my records to be released for the department's research. I expressed to her that I felt my privacy was being violated. She listened and then went on to explain that HIPPA (the privacy act supposedly meant for our protection) does not apply to government health agencies. She stated that they did not need my permission to access my records. She went on to explain that my doctors are required by law to turn over all of my medical records to the public health department and if they refuse they would be reported to the medical board for non-compliance.

It was really distressing to think that I have no control over this. I have lost so much faith in our system. After all the misdiagnosis, confusion, and unnecessary damage and pain, now they are taking away my privacy too? I was pissed and scared. I stopped and took a deep breath. I remembered the words I heard from a very wise man this past weekend "paranoia is a way of controlling things when we feel out of control". I was reminded this weekend to stop when feeling negative feelings, to trust the process of life and to breathe. I am learning to do this, to slow down. So, I sat with my uncomfortableness for awhile and I asked for some guidance.

After talking with a friend and taking some time to think about it and take some more deep breaths, I decided this may not actually be a bad thing. It may actually be that they are seeing a rise in positive Lyme testing and they are starting to realize what an epidemic we have on our hands. Maybe they are gathering information because they are actually starting to see that they have been misinforming the public about Lyme disease and what it does to people! The woman from the public health office said that they are evaluating information in people's records and comparing those with all the positive blood test results. Maybe this will lead to public awareness, prevention and proper education to medical professionals. The truth is, I don't have anything to hide or be ashamed of, so why wouldn't I share my records? Let them read it! Let them look at the pictures of the six pounds of tumors taken out of my uterus before and the ultrasound of the ones that are there now. Let them see the countless reports of migraines. Let them look at the notes of all my mysterious rashes, upper respiratory infections, immense body pain, and fluctuating weight. Let them look at my bloodwork with all it's vitamin and mineral deficiencies and abnormal values. Let them look at the map of pain and confusion. And, let them DO SOMETHING about the misinformation they've been giving to the public. For God's sake, let them make the appropriate changes in education, testing and protocol around this disease. Then just maybe, someone down the road won't have such a huge medical record, for them to violate the privacy of.

Don't look a gift horse in the mouth.

That's the phrase, isn't it? Well, I have been feeling almost like a real human being the last 2 days. I've had energy, a smile on my face, been able to accomplish tasks with a fairly normal amount of effort and it has been fantastic. I know that good days will come and go, but when they are here I am beyond grateful for them. I haven't felt like myself in so long. I kinda missed me ;-). I have been told by other Lyme sufferers to cherish the good days, not to overextend myself and to remember that the really bad days are often followed by these better days. I started a new medication this week. It's a medication used for Rheumatoid Arthritis, Lupus, and Malaria, among other things. It is supposed to help with inflammation, degeneration and joint pain. I thought I read that it can take a couple of weeks to build up in your system, so maybe my feeling better is a coincidence. Whatever the reason, who needs to know why? I'm just grateful for it. Today Ivy called me and noticed instantly from my voice that I was feeling better. I had no idea I was so obvious. Or maybe she just knows me that well. Possibly both.

Ask and you shall receive... So, the last several months I have spent an absurd amount of time in bed or on the couch. I watch a ridiculous amount of TV and movies. I read when I can, but the headaches, concentration issues and eye sensitivity can limit that. I try to choose shows and movies that are educational or at least thought provoking. For example, The Tudors instead of Days of Our Lives. It has historical value, even if not totally accurate. I find myself looking up historical facts and gaining an interest in other historical material. I have an old, giant box of a TV. These days it looks like dinosaur age technology. It's the kind of TV you probably couldn't pay someone to take away, but it works. I've been saying that I want a bigger, flat screen TV, but how am I gonna do that? I can only work a limited amount and don't exactly have the big bucks rolling in. I talked to my brother about buying me one and letting me make payments and we were researching possibilities. I figure as much time as I spend now in front of a TV, it would be a nice investment. But, obviously not necessary. So, I sent the word out to the universe that it sure would be nice to have one. Why not try a little manifestation? Can't hurt.

Two days ago, I got a check in the mail for an overpayment I made to Urgent Care several months ago for one of my "flu" visits. I figured I could use this money for something a little fun. You can't only buy medications, supplements and pay bills, you know... so I set it aside for something special. Yesterday, I went and had my first auction experience. Oh dear. I loved it! I am becoming my Mother. They say it is bound to happen. Guess what?! There at the silent auction was a 42 inch Sony HDTV. I bid on it and WON! Yay. It's enormous and I love it. $75! I think other people were worried it wasn't going to work, so only a couple of people bid on it since they make no guarantees and offer no info. I, however, with the help of my friend Mary had done an undercover operation. We found an extension cord and plug and tested it out, unbeknownst to the other auction goers. I also found a nice young man who worked there and asked for any background info on the TV. It came out of a huge, nice estate and wasn't just someone trying to unload an old TV. It was less than 5 years old. So, I had the in (and I was not going to share the intel with the other auction goers.) I figured they could do their own investigative work if they were as interested.

(Okay, side note, I could not think of how to spell unbeknownst and looked online with a very terribly spelled version of the word and was led to this-)

http://www.urbandictionary.com/define.php?term=unbenounced

LOL! I had to share even though I'm embarrassed that I spelled it that way. I'm kind of a spelling snob, so it serves me right.

So back to my happiness. I got a big HDTV just like I asked for. My surprise check in the mail covered half of it. How exciting.

I kinda look hunch backed or something in that picture. Oh well. I even had the energy to hook it up and get it working. Now I'll need to work on are the picture settings. See, ask and you shall receive.

I'm still weighing my treatment options and deciding whether or not to put the port and pict line in sooner than later. I'm also researching my doctor switch. I've had some suggestions, but all are out of state. One that looks quite promising is in Seattle. Wouldn't that be interesting if Lyme relocated me to my beloved Emerald City?

So, I don't know why I'm getting these good days, but I don't care. And if I collapse, I have a beautiful TV to watch my movies on! All in all, it's a good day. Thank you to all who have reached out with sweet and encouraging words. I had 3 e-mails from kind people I went to school with after my last post. It means more than I can express properly.

Let's all use our flashlights....

One of my best friends created a donation site last night to help me with all of the medical bills coming my way and living expenses. I am still pet-sitting, but have been unable to work at the hospital for the last couple of months. The treatment is about to get more aggressive and I fear that I may have to take a sabbatical from my pet sitting business as well not so far down the line. I am so humbled and touched that she would do this for me. A friend of our's, Matt, is the one that gave her information on how to set it up. Matt's brother has had several brain surgeries and their family is currently raising money for his expenses. I was amazed that during such a difficult time of his own, he would reach out to me. My struggles are nowhere near what their family is going through. The heart of some people is exquisite. Then, I woke up this morning to find an e-mail from a friend who has opened an online store and wanted me to know that she'd be donating a percentage of summer sales to help me out. Astonishingly beautiful. How amazing it is to have such beauty in my life.

I can not help but repeat my latest mantra, the shadow teachers are often the one's that reveal the most light.

I think of a pitch black cave or room and the light that comes through the cracks is brilliant and bright. I see our struggles the same way. Who can focus on the darkness with such brilliance shining through the cracks and corners? It at least can shift your focus. I have been struggling lately with my mind, heart, health, the world, the unknown, etc. Our world seems to be going crazy at warp speeds. Almost everybody I know is or has someone close to them going through abnormal hardship. The oil spill is devastating. It's best to keep the news off, unless you want to hear awful tales of discontent and awful intent. I've been reading a book about the Lyme epidemic and some of the players and it's heartbreaking. I can accept that an accident occurred and people got sick, but I can't accept that there is true malice in the world. Let alone malice created by sheer greed. Years ago I read "Conversations with God". In it he expresses the idea that there is no source of darkness, only a source of light. That there is no evil, but rather an absence of love. He explained it using a flashlight metaphor. If it is dark, you can turn on a flashlight and dispel darkness. But, if it is light, there is no flashdark. You can not dispel light with darkness. People act darkly from an absence of light. This came to me today when I was thinking about my fight with Lyme and the people involved. There are greedy people suppressing information, manipulating the system and hurting multitudes of people. Then there are the beautiful people taking on the fight, giving it a voice, doing the research. And, there are the Doctor's sticking their necks out to help those of us that were not properly treated in the beginning phases and have a challenging mountain to climb because of it. And, there are the beautiful faces of the people in my personal life or those who reach me through this blog. I'm in awe of them and their exquisite hearts and desire to help others. So, I have to look at all the players and know that the people creating the pain, discord and imbalance are doing so because they lack the light. They can alter our lives, but they can not destroy our spirits. They lack a source. We do not. My health issues feel like a microcosm of the world right now. It's going to get a lot worse and uglier before it gets better. But, it will get better.

I saw my Doctor on Monday. So much occured. The co-infection panel came back and I am, in fact, infected with more than just Lyme borrelia. We added 2 new supplements, an auto-immune drug to help with the inflammation, degeneration and joint damage. I have to go get an eye test before I start taking this medication as it causes retinal damage in rare cases. We also discussed the next step in my treatment and the options just ahead of me. I am currently on 2 oral antibiotics a day, several supplements, an anti-fungal to stop any yeast overgrowth from the antibiotics, and an intramuscular antibiotic shot once weekly. I feel icky. I probably spend more time in bed than out of bed. I have a decision to begin to treat more aggressively now. At some point I need to have a port implanted into my chest with a pict line to administer IV antibiotics. This will make me even sicker before it can make me better. Or, I can also add the next antibiotic through more intramuscular shots. The down sides are - they hurt, it would be several times a week and treatment could take longer with IM shots. The up side, I wont feel as awful all at once, the cost is pricey but less than the line, and I will not feel so much like 'a patient'. The port is a surgical procedure and once it goes in, I'll need nurse home care visits to change dressings and flush the line, etc. Ugh, really? A home care nurse? This doesn't really seem possible. If the port and line eventually have to go in, then why not now? And yet, I also want to be gentle with my body. So I am taking the next couple of weeks to weigh the options.

I found out this week that my Doctor is closing her practice. She is doing so for personal and professional reasons and moving to the East Coast. I feel so safe and secure with her and this was quite a blow, but I understand she needs to do this. It made me sad though to hear from the office that the 'hostile medical enviornment in California', the managed care fiasco and parts of this epidemic contributed to her decision. Lyme literate physicians are few and far between, to say the least. I have moments when I wonder if I should move to the East coast, where they have changed laws surrounding this disease and how to treat it. Since it started on the East Coast, that is where there are more specialists, a wider understanding and political foreward movement. We are on the other side of the country, I fear it's going to be years before we catch up. There is a doctor in Redwood City that I could transfer to, but I'm not sure if it feels right to me.

My lovely friend Marlie reminded me yesterday that as one door closes, another WILL open. Having my doctor leave is a blow, but it will be okay. Thank you, Marlie :-) My path will take me to the right places if I am willing to listen and face the challenges. Ultimately we all must trust. Remember, times are tough, but the light outweighs the dark. We are in a time of great contrast personally and worldly. Facing our struggles, decisions and eachother with courage and love will make all the difference in the world. So many people are making a difference in mine.

Anything, just not Lyme...

Today's post is probably going to be a bit scattered. I apologize in advance. It's been a week since I wrote. It's interesting because I think in book and blog form in my mind all day everyday, but cease to find the energy to write. As things happen, I word whatever it is into different sentences, then edit, delete, retype. I can see the words in my mind typing across a page or often as already printed on the pages of a book. That has been the case all my life. I knew as a small child I was meant to write. One of my fondest memories was in 6th grade when a fellow classmate, Clarissa, and I put together a newspaper and had it printed. I remember editing it and deciding how to cut, paste and place the different articles. We also put together a book of poetry and illustrated it. I don't have many fond memories of middle school, mostly moments of feeling awkward and different and fearful imprint my mind. But, I can remember vivid details about those projects. Thoughts I was having, the dried glue stuck to my finger tips, the room on the first floor of the tall, cold gray building on Forest street we worked madly away in. Just beyond the old mis-colored paned windows were picnic benches littered with the popular kids. I dreaded ever having to walk through the courtyard that entertained them all. I felt much better tucked away in the room on the other side of the glass working on our newspaper. I won a writing award that year for one of those projects. Interesting, as I write this, I realize that is the year the tick bit me. I wasn't thinking about that at all when I first started writing just now. But, that right there is a perfect example of how consuming this disease is. It seems to poke it's head into every moment I have in one way or another. It's like being in a peaceful room minding your business and having the door fling open and some, dumb loud, ugly creature babble and wave " I WAS THERE!".... Get out already. Ugh.

If Lyme is not popping into my memories to show me proudly how it's been a huge presence in my life for so long, then it shows it's ugly face in physical manifestations. I'll fall down in the grocery store, stutter in the middle of a sentence, get lost in downtown Pacific Grove where I've lived 20 years of my 34 years on this planet. My hand's will shake uncontrollably, my face will twitch, I'll fidget because I can't get comfortable, my heart palpitates loudly and I am short of breath often, my body "buzzes" and doesn't allow me to sleep. The laundry list goes on and on. I spent hours on the bathroom floor two nights ago doing my own personal rendition of the Exorcist. I had terrible shooting pains through all of my body, was sweating profusely and chilled to the bone, but couldn't leave the toilet to go change my pajamas or get warm. I had moments where I literally thought to myself I CAN NOT DO THIS! What choice do I have? I guess I should have thought I can not do this gracefully. I have to do it.

Some of the most troublesome parts are the mood swings. Some people refer to it as Lyme-rage. It often feels like I've taken a mean or grumpy pill. I don't feel like myself much of the time. I feel angry about things and say things that are totally out of character. As I am saying them, I just want to stop, take a deep breath and close my mouth, but I can't. It feels like someone else is operating my body. I feel like a ventriloquist doll. I often feel like a prisoner or stranger in my own body. It's scary. Days when I'm being awful, I try to tell my friends and family that I'm just feeling "lymey". Maybe it's a neurological thing or maybe it's just from being so sick of being sick and feeling out of control. I don't know.

The more I study this disease the more contradiction I run into. It leaves me feeling helpless. There are doctors pitted against each other, miseducation plagues the internet and the minds of many medical personnel, there is political controversy, someone in each room that seems to have an opinion one way or another on the matter, corruption from government, insurance companies and big pharma at every turn. It is maddening. I had no idea how amazingly iniquitous our system could be. I started reading a book about the lyme epidemic & controversy. Maybe not the best idea. It fills my heart with grief, disappointment and doubt. There isn't much I don't doubt right now... myself, our government, the health care system, the very illness that is stomping through my life, the future, the world. The list goes on and on. I think I may be in the bargaining phase of grief right now. I keep begging for this to be something else. Not Lyme. Not such a controversial disease. Many people are believed to have it without positive blood tests. I have wished for moments that mine weren't so profoundly positive because then maybe I could go back to blaming myself, compensating and adapting to the conditions of my body's changing environment. Then I remember how it has come to this point, where adapting to, was just no longer an option. You can't ignore tumors, large swollen joints, a heart murmur, central nervous system damage, fatigue, mineral deficiency. As one of the doctors said in a documentary I watched, "even if your blood tests present a false negative and you really do have this disease, it still needs to be treated." So that would only add another irritating level. I guess I have to remember 'how lucky' I am that I actually meet the standards for the CDC, IDSA and insurance companies as far as my tests are concerned. Wow, like winning the lottery. The luck I carry :-) It matters though. It matters in the context that when people start spewing their rhetoric about how they've heard chronic Lyme doesn't exist or it's all a scam, I have my blood work to turn to. Apparently many people don't have that. I wonder how people can believe this in the first place. There are 3 stages of Lyme, the third being 'Late stage neurological'. So if there is a late stage phase of the disease, how can there not be a chronic form? Also, the misinformation that Lyme is hard to get and easy to cure contrasts greatly with the fact that they have been spending millions of dollars on a vaccine to market for it. If it's rare, hard to get and easy to treat, why a vaccine? You don't have to dig too far to find the contradictions.

I have never taken the easy road. I suppose it is fitting that I would fall ill with a controversial illness. An illness that needs a voice. I am tough. I've fought worse odds than this I suppose, but somedays I just don't want to do it. I want to just stick to my hospice work and working with the grieving children and the animals. I like giving them a voice. I don't want to be a face or voice for Lyme disease. I don't want to be sick. Or, if I have to be sick, can't it just be something else? I want it to be something that can just sink under the radar, something that is understood or respected, something that has lots of specialists close by to choose from, something not so life consuming, something with an end in sight.

I'm feeling overwhelmed and unsure of what to do. I can't tell where one thing ends and another begins. Which of my symptoms are just Lyme progressing? Which are herx reactions? Which are depression induced? Which are created by power of suggestion? Which are reactions to the drugs I'm taking? I finish today's post thinking that just maybe... I should join a support group before I spin into total insanity.

People

I talked to my brother yesterday and he asked about my blog. I haven't written in about a week. One, because I had a friend in town and was distracted and consumed by that. And two, because I have been struggling over whether or not to write about some of the things I'm struggling over. After a talk with my incredible brother, I remembered that the whole point of this blog is to talk about this experience in a raw way, to show other people what it's like, and to help anyone else who may be feeling the same way. So no topic is off limits. That was the idea. That's the rule here. So here I go, in my discomfort.

Illness of any kind is kind of a weird dichotomy. It pulls some people closer to you while simultaneously scaring others away from you. Some people care and want to know how you are, other people don't care at all and can't be bothered to even ask. This disease is a teacher in more ways than one. It's teaching me about the importance of self care. It's teaching me that I'm worth healing. It's teaching me about limitations. It's teaching me how to be gentle with myself. It's teaching me how to be in pain, but not suffer. It is also teaching me how to decide who to keep in my life and who not to. I have a very limited amount of energy these days. This shines a light on how valuable that energy is and the waste in placing it places unworthy of it. People can be really insensitive. I believe that they really just don't know what they are saying or doing, so I forgive them for it. I have enough on my plate, so a side of resentment doesn't need to stay. But, for sake of examples and sharing, I will share a few moments I've had since getting sick.

• I have had people I really consider to be in my tight circle of friends not even acknowledge the fact that I have been diagnosed with something that is really scary and life altering for me. Or for some, except, by sending me a handicapped emoji.
• I had one friend ask me if you "get Lyme disease from humping deers".
• I had one friend, upon seeing me sick for the first time, immediately reduce me to a clothing size and then express how my "recent weight loss" made them feel fat.
• I had one friend compare my inability to have children to their lack of a boyfriend.
• And, my all time favorite is the friend who, on a day that I was in less than good shape (covered in a Bartonella rash, puffy eyes, limping, my cat was ill with an abscess, I was exhausted, etc., etc.) look me in the face and say "You know Lyme disease is an STD, right?"

The last one is one I really want to deal with. First of all, even if it were, what is the intent on saying something like that to someone who is ill? It played it's role. I immediately felt horrible, overwhelmed, confused, ashamed, scared, worried, etc. Now the truth is that there is some speculation about this concept, but no proof, no studies, no data to back it up. The thought is that often couples get sick, so maybe... But for as many couple who are both sick, there are as many couples where only one person is sick. Couples also go on the same walks, live in the same areas, travel to the same places, so obviously are susceptible to the same bites. Entire families get sick with this disease. Entire neighborhoods. The tick does not have to stay on you for 36 hours, it doesn't have to be a deer tick, it isn't rare and it isn't hard to get. Those are all fallacies. There is thought that other insects than ticks are now carrying the disease, but that is not an absolute. I guess because they have also discovered that Lyme can transmit in utero that there may be other possibilities as well. I called my dear friend Jenn, who also is sick with Lyme disease, on the East Coast and told her how upset I was. She told me that she had a similar experience. While sitting in a chair with an IV in her arm for a treatment, a guy said something very similar to her about it being an STD. She, of course, felt terrible, panicked and contacted her Doctor (A top Lyme specialist in the country) who quieted her concerns and assured her there are no studies that give this thought merit. My doctor, whom of course I immediately contacted as well, said it is a complete unknown and if I'm worried about sexual activity (which I'm not) I should be more concerned about being susceptible to getting something from someone else, since I have a compromised immune system.

I am doing my best to stay strong, but this is overwhelming to say the least at times. For me, that day, I just couldn't add this element to the disease. I just couldn't. It brought up old feelings of shame, inadequacy, isolation, you name it. I suppose those feelings came from childhood. I have worked hard to quiet them. I got bit by a bug. I got poor medical care because the medical community and people are uninformed. I now have a disease that is possibly fatal. That is all. If there is an aspect that turns out to be that I can make someone else sick because of that, I will do everything in my power to be responsible so that no one else ever has to feel this way. Of course, early detection and this is not even an issue, so there's that too. Anyone in my life that I would want to have an intimate relationship with, will know all about me and any concern they should or shouldn't have. I don't need to feel ashamed or dirty or wrong. This disease has a huge potentiality for self blame and doubt WITHOUT this aspect. Years of being told it was psychological, the deep depression it causes, being told the pain is in your head, misdiagnosis after misdiagnosis, everyone telling you constantly 'Well, you look good' when they hear that you are sick (so it must not be real).... it goes on and on. It's a struggle in your head, heart and body to just get through each day. I refuse to take this aspect on as well. As my brother said so eloquently yesterday " Fuck em ".

Remember that people can be careless with their words and actions. It's human nature. It has no reflection on who you are. It's more them showing their own fears through projection. No matter who you are, what you're fighting, or how you 'got' it, each day we walk through these battles and 'dis-eases', we are braver and stronger.