Maybe tomorrow will be better

I know this all has a bigger purpose, I do. I also know that struggle makes us stronger and that this struggle is making me stronger, but today I'm just tired and I don't feel strong. I'm tired of hurting. Last night I had an episode that lasted for hours that was bordering on unbearable. My IM shot was on Thursday and probably it was a timing thing as the medicine was released. The pain was moving from one place to another and my anxiety level was through the roof. I was feeling really overwhelmed and paranoid and just spinning in circles in my mind. I decided that maybe a glass of wine would calm my nerves a little, so I had one. Bad idea. I haven't had a drink in weeks. I don't know if the glass of wine had anything to do with it or if it was just coincidence, but shortly after drinking it, the pain in my body elevated to new levels. It wasn't just my joints and muscles, my stomach felt like it was on fire, I was having stabbing pains in my chest and shooting pains through my limbs. It was truly agonizing and nothing was stopping it. I curled in a ball. I tried stretching. I took my pain killers. I tried acid reducers. I tried all the muscle creams. I tried everything I could. It was just what it was and I needed to ride it out. It took hours. Words are limited in trying to express this. It felt like having a tooth ache in 20-30 different places in my body. And, the sweating episodes are crazy! I feel like I am on fire, I soak my clothing and bedding and then I chill and have to pile under blankets. Then the sweating starts again. I honestly was having visions of running outside and leaping off the deck to make it stop. I know this is dramatic, but I promised to be honest and raw in this blog. And, that was where I went. It felt like poisonous snakes were writhing around under my skin and biting me. I have moments in this that I do not know if I am strong enough to do it. Then I realize AGAIN that I don't have a choice. I feel briefly like I am going to break or go crazy. I don't. I only worry I will. I cry when it gets overwhelming. I think the release helps.

It was such a beautiful day today and I wanted desperately to get out and enjoy it. I logged on to Facebook this morning and saw posts about how people were going to be spending their day. At barbecues, on boats, at the pool, etc. I felt envy. I wanted more than anything to feel good enough to do this stuff, to soak up the sun, to just feel happy and free and not trapped in my body. This is just my current reality. I have to embrace it and do what I can to overcome it. I'm not sure how, but I will. I know the treatments are working because I feel so awful. As the bacteria dies,it spills the toxins into the system and exacerbates symptoms. So, I should be glad, but today I'm just tired. So much of my life, I've felt different and longed to feel normal. I had learned to embrace my differentness. Now, this feeling is mimicking that old feeling and I hate it. This too shall pass, I tell myself. And, I know it will. For brief moments though, time feels frozen and unchangeable. I took small steps today. Took the dogs for small walks, took breathes through the discomfort, reminded myself how much worse things could be and of all my blessings. And, here I am on the other side of that day. I made it. I'll make it again. I'll make it through each and every day like that that I need to. Because, we really are so much stronger than we think we are.

My sugar cravings have been OUT OF CONTROL. I never was much of a sweets person, but the last couple of months I have been plagued with an intense desire to stuff cookies, cake, candy into my face. It's almost uncontrollable. I have no appetite for anything else and am finding it hard to stomach a lot of foods. Unfortunately I have learned that the Lyme feeds on sugar and I'm not really the one craving that. I need to fight the urge with all I can. And, I also want to be able to let go and enjoy ice cream or a cookie if it's gonna make me feel better. This disease is a disease of many contradictions I'm coming to see. The treatments that make you better, make you feel worse. You're cravings work against you. When you have energy you really should rest despite it. When you're forced to rest, the pain actually stops you from having true therapeutic rest. Grrr. The neurological symptom that is screwing up my sense of smell makes yummy things smell terrible. I have to sniff test all my shampoos before I can decide on one that I can stomach for the day. You'd think it would only be fair that if good smells turn into bad smells, that bad smells should smell good. Not so. Bad smells just smell worse. It's like all my senses are magnified. I was cleaning up the dog run today and almost vomited, the smell was so strong. I am a Vet Tech, I am used to animal smells. Or, I was anyway. As, I was spraying anti-bacterial air freshner (which then smelled worse than the poop to me), I read the bottle claiming to kill 99.9% bacteria. I imagined drilling a hole into my skin and just spraying. I could see my veins filling up with the spray and imagined being instantly "disinfected". I put the bottle down in my mind, put my sunglasses on and marched out the door for the beach. Ahhhh, if only it were that easy. A friend told me that his wife is 6 months into treatment and is finally feeling better. Ugh. Six months! That's on the shorter side of what I've heard. Time to break some records, I say. Not that I should be drinking Diet Coke, but it is a guilty pleasure. The carbonation is too intense for my taste buds. It is painful. I have always loved spicy foods and sauces, I can't take them right now. It's actually painful. Who am I? I choose to spend even more time alone because I know this won't be fun for anyone else, which doesn't help with the isolation and sadness. Other people are off living their lives, being normal, having fun... as they should be.

I do feel inspired at times, but I also feel really sad too. My friend Ivy reminded me the other day that this is grieving process. I was shocked. Being shocked shocked me more. Grief work, it's what I do. In my job often, with hospice volunteering, with Griefbuster's. And, here I was not remembering that of course this is a process of grief too. Grieving all the things that are different than I thought they'd be. Grieving lost time. Grieving not being able to birth children. Grieving my health for the time being. Just another reminder about the power of grief. It's a beast. It comes in waves. And, even when you think you know a hell of a lot about it, it can still sneak up on you and take over. The only way out of it, is through it. The only way through it, is through it. So that's the path I'm walking. Or, writing really.

You know, I guess I just needed to vent. The last 24 hours sucked. Maybe that means tomorrow will be better.

Matters of the heart

I haven't written for a couple days. I think I just needed a break to absorb the reality of the situation and to ground myself. I was feeling a bit paranoid, frustrated and overwhelmed. As always the right people showed up and I was able to move through the negativity and fear. I know I can't simply will this away, but I can check myself, my emotions and my thoughts around it. Anger will get me nowhere as far as healing my body in the current moment, however may be quite useful in becoming an activist regarding this disease. I'm learning more about our country and our systems and wanting to unplug more and more from them. Of course, in some ways I must still remain.

Yesterday I had a an echocardiogram. My doctor, one doctor ago, found a heart murmur. I've never had one before. The last few months I have been having chest pains, shortness of breath and palpitations. I thought it was just anxiety around the uterine issues. I thought maybe panic attacks because life had been disrupted by the uterine tumors again. This time I knew there was no possibility of having children. That's a lot to absorb.

I always thought I would have children in my twenties. I have worked with children for years and years. I was so excited as a child to finally be able to babysit when I was 11 or 12. That is actually how I was able to remember that the migraines started around the same time as the tick bite. I remember I was playing in the yard by the tower of jewels and my vision went blurry. I thought some of the buds from the tower of jewels must have fallen into my eye, so I went inside and flushed my eye over and over. The blurriness didn't resolve. A bright light started shining from one side and then the pain came. I had one of my first real babysitting jobs that evening on the other side of Melrose street for little Lauren. We had to cancel. I was devastated. That night began a search for the reasons for the migraines that ended with no answer other then the good old "idiopathic reasons". We never thought to think of the tick bite. Why would we? I have continued to have them for the 22 years and counting.

After my last surgery, I developed an attitude about children. I started keeping my distance from babies and joking that people really only need fur babies. The truth is, on a deep level, I knew I would not be able to have children and I didn't know how to accept that fact. It was too painful to see others with their plump faced babies, or bright eyed children and know I would not experience that the way I thought I would. Joking things away and keeping distance can ease the pain of heart break. Once, I understood this was the reason for my distance & attitude, I have been working to relieve some of the hurt that is attached to it. I realize that I have other things to create and give birth to. Books to write, people to help, a voice that needs to be heard. And, I know the child that is mine will come to me as I came to my family.

I was pregnant once at 19. But, I was so ill and the situation with the father so unhealthy, that it resulted in abortion. I know now why I was so ill. And, I also know now that Lyme can cause birth defects and miscarriages and unhealthy pregnancies. This diagnosis has given me so many answers. I find some relief in that. It's troublesome to my heart to think that a couple bottles of Doxycycline could have stopped so much pain. What can I say though? These struggles and uncertainties have created a strong resolve inside my heart, one that is not easily broken. I thank them for that. This resolve certainly wont be broken by this disease. I spoke with a dear healer and friend yesterday that told me this is making me stronger. I believe it. I know it.

"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved" ~ Helen Keller

The echo was interesting. Watching my heart on a screen. At times it looked like there was a tiny set of hands clapping to the music playing in the room during the procedure. I watch my heart spit and suck in blood in technicolor. It played sounds I've never heard. My mother said to me "You didn't know all that was going on inside of you, did you Lou?"

"Nope, there's been all kinds of parties going on inside of me that I had no idea about for a long time now Mother". I replied

As the technician poked and pushed at my chest, clicking buttons on the screen in front of her, the music on the small boom box in the corner of the room spilled out bad music from a local "work-place" music station. On came the theme for Flashdance and I danced back to memories of being a child. I made up routines to all kinds of songs and would gather my family around to be the audience. Often when practicing I would sing aloud to the song. Often I had the lyrics all wrong. This was one of those songs. I giggled as the tech moved the ultrasound wand across my chest and then asked, "Hey Mom, remember when I used to sing this song as 'take your pants off and make it happen' and how horrified you were? You put a stop to it immediately. We all laughed. I then recalled how I also made up a dance routine to a Depeche Mode song, "Master and Servant' in 6th grade. My brothers read the words the night before and told my mother it was about a sexual game (I had no idea, I was 12). She almost made me pick a different song the night before. I had practiced for weeks, so I begged and pleaded and cried. She gave in. I think she payed attention to the words of the songs after that. We shared silly stories from our childhood while she mapped my heart with her wand. The laughter during the echo was good for my heart.

I miss dancing. I miss yoga. The bottoms of my feet and all my joints have been so painful for so long, it's been forever. I will put this on my list of things I will enjoy getting back to in no time at all.

The concern for my heart is that bacteria has caused damage to it. They believe there is some regurgitation and that's what's causing the murmur. They just want to see if something will need repair or if it is a harmless murmur. I'll know more next week. My true heart stands strong, bigger if anything by this experience. I have opened my eyes to the corruption of big Pharma, managed healthcare, greediness and imbalance in our world. I hold the multitudes of people who are suffering with all kinds of ailments or illnesses in my heart and pray for a time when concern for human life will outweigh the greediness to gain wealth and power. It's all an illusion anyway.

I started intramuscular shots in addition to the oral antibiotics a couple of days ago. My sweet friend Ivy just graduated from nursing school and agreed to give me the weekly shots. A poke in the muscle at the top of my butt with an 18ga needle. It's 2cc of a thick liquid and a slow push. The antibiotics disperse over a few days. The stick didn't hurt, but the slow push did. It hurt down my leg to the top of my foot. I've been sitting on icepacks since.

I'm grateful for the many friends that have been so kind during all of this. Situations like this are when you determine your true friends and weed out the ones that never were. I have a limited amount of energy and a very focused determination now. I only want the realest of real people in my life. The kind, compassionate people who help you want to grow and evolve as a person despite struggle. The ones that will come and sit by you on a Friday night when you have no energy and are shaking, twitching and sweating. The ones that will come and give you an injection and hang out after and shoot the shit. The ones that will fly in to be my your side and help with a petsitting job. The ones that educate themselves on what is happening to you and e-mail with helpful hints or rant on Facebook about the injustice of it all. The ones that will hold your hand and accompany you to appointments you're frightened to go to. The ones that will help raise money to pay the immense medical bills. The ones that calm you down after an insensitive person says things about the disease you have, stating the facts and their love for you. The ones that simply pick up a phone, text or email just to see how you are. These are the ones you keep. The rest you shed like the toxins, bless them for what they taught you, and release them.

With much love to all and many blessings. I am going ice my sore butt and take my beautiful dogs to the park. Nature is one of the best medicines.

Into the bargain bin..... AGAIN

Sleep eludes me, yet again. I've been told the insomnia is part of the Lyme, but tonight (well, last night really) it's also because of my emotions. Well, also due to the Lyme, so there you go. It's hard to believe that this is real. I slept from 2-4:30, sort of.

The antibiotics are working I'm told because I feel even worse than I have. I saw my doctor yesterday. On the 45 minute drive, I was wondering how I would answer the questions "How are you feeling" and "Where is the pain?". The first is fairly simple... Umm, like shit. The second feels ridiculous to answer because the answer is my head, my neck, my teeth, my left ear, my lower back, my abdomen, my upper back, my legs, my feet and hands. Oh, and now my lips and tongue too. It's hard to tell what is the Lyme's natural progression, the Herxheimer reaction or other side effects from medications, I honestly can not remember the last time I was pain free. I really can't. I have been living with some kind of intense body pain everyday for years. And, for years I've been told I was drug-seeking, under too much stress, feeling pain from depression, among other things. I am 34 and have already had 2 major surgeries and another possible surgery sits eerily in the not so distant future. I'm angry that I was made to feel like I was crazy, dramatic, or wrong about the fact that I KNEW something was going on in my body. I listened to the professionals with the M.Ds and P.H.Ds behind their names because that is supposed to mean some kind of superior knowledge. No knowledge surpasses our own intuition when something is going on within us. If nothing I ever say means anything to anyone other than the next line, that's fine by me, as long as one person hears it and believes me. If you feel something is going on with you or your body, BELIEVE YOURSELF, leave no stone unturned and get to the right place to help you. Seek help outside the box, away from the corporate/insurance run medical system we are surrounded by. I have blamed myself for years, thought something (other than an illness) was wrong with me, didn't have faith in my own feelings and intuition, and have lived with pain that is unacceptable. And, now I have a chronic disease I will probably have for the rest of my life.

Yesterday was difficult. My latest bloodwork showed some significant things. But, before I get to that I need to tell you how the screening for Lyme is done. If you or your doctor believe that you may have Lyme disease, they will run something called an ELISA test. If you test negative on your ELISA test, they rule out Lyme and move on to other testing and diagnostics. The ELISA test is ancient, is not sensitive and has a false negative percentage over 50%. Yet, this is medical standard. Why don't doctors just start with a western blot test? Lyme disease is known to inhibit the immune system and twenty to thirty percent of patients have falsely negative antibody tests. I tested negative on the ELISA. Please keep in mind, that the only reason I even got tested with ELISA was because I found a doctor (out of my network) that was willing to dig deeper into why I was having the uterine problems. She ran further blood tests to seek out any imbalances. Although the ELISA test was negative, she found significant problems with my body as far as blood sugar, vitamin and mineral absorbency, cortisol and adrenal function.

I had heard a rumor that I should not settle with just the ELISA test if I truly believed there was a chance I had Lyme disease, it felt true in my gut, so I listened. I asked my doctor to please run additional tests and paid $600 out of pocket for them. My western blot was positive and I was referred to a Lyme specialist. I saw this doctor yesterday for the second time. Apparently my blood results show a severe case of Lyme infection as well as co-infections (Ticks carry more than just the Lyme bacteria). I am in late stage Lyme disease. I have neurological Lyme disease. That is difficult to write. Because it hurts my heart and because I have sporadic Lyme induced dyslexia. Fun stuff. The numbers are so significant that even the CDC and ISDA's very "high" standard for positive testing has to acknowledge that I have Lyme disease. This is complex, but in a nutshell the truth about this disease is being suppressed, the research has far surpassed the guideline standards and there is rampant corruption due to the ties the government agencies (meant to protect us) have to the health insurance companies (among others). Apparently I am "lucky" that my numbers are so pronounced on my blood tests because no one can dispute my disease, as this is common. So, if I can keep my insurance, I'll be covered for treatment. Unfortunately the treatment that's "accepted" will not help me, so most of my treatment will be paid out of pocket. Which I will have to figure out a way to do because I am progressing so rapidly and I want my body back. I'd be lying if I said I wasn't scared. Some of the episodes I've had may possibly have been small strokes. I am now told that I am looking at a minimum of 5 years for treatment. That is basically the rest of my thirties. I'm in shock. I never thought my life would look like this. The Lyme has dismantled my immune system, caused damage to my system (some irreversible) and is resistant to a lot of the antibiotics, so is complicated to treat. The other infections going on make treatment even more difficult. It's possible that the Lyme will be resistant to the medication and I will continue to progress downwardly. Although, I will NOT allow that to happen. I plan on defying all odds and turning this thing around. Knowledge is power, and so is finally trusting yourself. The sad thing is if caught earlier during all the years I was seeking help and had I received the proper care, this could have been treated with a couple bottles of Doxycycline. I start intramuscular antibiotics today in addition to the oral medications. Thank heaven for my nurse friend that will administer the shot for me, since it is one that can't be done alone. Another blessing. Thank you, Ivy.

Now everything feels so unsure. My body is in crisis mode. I am doing everything to keep my spirits high. But, I am angry at the injustice of all of this. At first it just seemed like ignorance, but digging a little deeper I see it's just plain criminal. I have only brushed the surface in this blog of an actuality that is almost unbelievable. Somebody somewhere put a dollar amount on my life. It seems my worth is in a bargain bin in a high price office building somewhere. I bet on my life if the people at the top there had a daughter falling into that bin, they wouldn't let her get tested at her local hospital.

Yay, a rash.

The symptom of the day is a mysterious rash. I feel like I'm getting a backwards make over or something. It's pretty hot. Why can't I develop a new bizarre symptom that is helpful? My legs could suddenly start shaving themselves or something productive like that.

I have so much I want to share about what I know about Lyme Disease. Yet, I don't really know where or how to start when it comes to the most important aspects of this fight. I figure, like most things, it will come in it's own time. I will just put my hands to the keyboard one night and it will happen. The fight I am having to get my body back is just a microcosm of the fight we are under to get our higher conscience back, to clean up the mess and corruption that is destroying our beautiful country. If anyone has the opportunity to watch the documentary 'Under Our Skin', please do! Unfortunately, you can't rent it anywhere (I've checked). I have it and will loan it to anyone who wishes to know more. This is an epidemic. I don't want you to watch it because of me and my personal struggle, but rather to give you knowledge that may help you or someone you know who is suffering. And, to open more eyes to something criminal that is going on while many sit back and remain in the dark. I also sent a couple copies to a friend in Seattle to share. Contact me if you'd like to borrow one. Otherwise it can be purchased on their website. It goes to a great cause, but it's a bit expensive for a DVD - $35.

There is going to be a screening of the movie in Monterey on June 8th.

Lyme Disease Education Group

Guest speaker Raj Patel M.D. Lyme specialist

Community Hospital Conference Rm. A 4th floor/Rehabilitation center

June 8th 6:30 - 8:30

Amy Tan (Author of 'Joy Luck Club') and Rebecca Wells (Author of the Divine Secrets of the YaYa Sisterhood) are both suffering from this disease. Rebecca Wells has been in and out of a wheel chair and Amy tan has had neurological issues so bad that she's suffered from hallucinations. They both have written about their battle in books or articles. If you are drawn to do so, please read.

I'm in awe of the support people have extended to me so far. I woke up today to find a beautiful letter from an old friend that filled me with emotion and love. Later, while waiting in the lobby at CHOMP for the first of the heart tests, I opened my Facebook app to entertain myself and found that one of my friends had posted a link to my blog. It was followed by kind, supportive words. I feel so loved. A friend of mine gave me the money to have the $1400 worth of blood tests done and payed for a few of my doctor's visits. My friend Marlie, who is one of the strongest, most generous, loving people I have ever known, raised money to help with my expenses. She hand painted these beautiful scrolls she makes. People who don't even know me donated. My friend from NY that I hadn't seen in years just happened to be visiting this area a few weeks before my diagnosis. She and her wonderful boyfriend took me for an experience of a lifetime. Skydiving. It just so happens that this friend is struggling with chronic lyme disease too. Something synchronistic about her timely visit.

All this strength everybody credits me for having really has to do with all of the people that are holding me up mind, body and spirit right now. How can I possibly feel self pity or negativity when so much light is shining amidst this darkness. I have moments where I start to panic when I think about how I will continue to get treatments and such, but I have to let go. I'm worried that I soon wont be able to do the petsitting. I haven't worked at the Vet Hospital in weeks. I worry Maybe I'm worried for nothing. Just maybe I will start to improve and all of this will be behind me in an instant. I just don't know what to expect next. Ugh, the great unknown. I have to jump out of that plane and be in the moment, see the beauty and know that I am going to land safely. And remember... if the chute doesn't open, there is a reserve chute.

I watched a Dateline type show tonight about a man who had been wrongly committed of a crime (DNA evidence 16 years later cleared him) and when he was finally released from prison, he was dying of cancer and had days left to live. The story was so amazing and if I had read it in a book, I would have said the fiction author took it to far. Truth really is stranger than fiction so often. Anyway, the point of this is that while trying to tell my Mother about the show I said in all seriousness "You can not get an organ transplant when you are a convicted fennel ( that's felon in Lymese)." Lol. I keep doing this. The wrong word thing. I know I'm doing it when I don't even hear it too, because I've had some awfully strange looks during conversations with people. Maybe they are looking at my hands or rash. Who knows. Really, I'm doing my best to not care. My scars, my rash, my nutty words all tell a story. A story whose telling, may someday change life for even one person, so let them stare.

Smiling with a twitch. Loving you all.

Innnn to the bargain bin...

Well, I've been wanting to write all night, but my hands have been especially hurting tonight, along with everything else really. Everything has ben progressing so fast over the last couple years, then months, then weeks, and now days and even hours. Good and fairly normal moments come, but then I have unbelievably abnormal moments in between. I've had strange little ticks (not the bug, he's long gone, but neurological ticks) mostly facial, but tonight my feet were practically tap dancing without my being able to stop them. This came after a full body episode. My head felt like it was on fire, I had heart palpitations, I broke out into a sweat, and I started having strong shooting and stabbing pains from my abdomen and lower back down my legs. Tonight it was so bad that I just laid on the couch and cried and waited for the pain killer to kick in. I am trying not to 'suffer' with the pain. I try to acknowledge it, observe it and do what I can to not tighten up more and add to it. Sometimes this is easier said than done. But, I will continue to do so. And, thank God for the painkillers when they work.

Another lovely and attractive symptom that I have been experiencing is 'hand cramping'. I don't know how else to describe it. My hands just stick in funny positions and stay like that for hours at a time. I can slowly move them, make fists, and mindfully relax them. But, the minute I put my mind to something else they pop back into their previous position. This has been going on for weeks, so a handful of my family and friends and many strangers have witnessed this. I had a friend say to me with quite a smirk "Just don't go to Salinas like that"... Well, you've gotta laugh.

(Did I mention what a sexy disease this is?)

For those of you who don't live around here, Salinas has a lot of gang activity. You don't want to throw the wrong hand signals while driving through.

The more I learn about this disease, this invader of my body, the more outraged and saddened I am. And, the more determined. There is a lot of corruption in medical politics. In ways I didn't think possible. I will write more about this soon. I need to get the wording right. I'm not ready to go there in specifics yet. But, if anyone would like to get more information, please watch the incredible documentary Under Our Skin. I have a copy if someone would like to borrow it and will actually watch and return it. It won many film festival awards and helped (I believe whole heartedly) save my life. It was a beautiful friend of mine, familiar with this documentary and the battle with Lyme disease, that helped get me to the right doctors. Everybody should have this knowledge. Everybody. It's about more than just Lyme disease.

www.underourskin.com

When a family member got the news that I have been diagnosed with chronic Lyme disease, she sent a book she had just read. Strangely, Amy Tan (author of The Joy Luck Club & several other books) has just revealed in her memoir that she has Chronic Lyme Disease. She talks a little about the politics and this disease.

This is not as rare as you may think it is.

We have been pumped full of false information. I read the chapter she wrote on Lyme in her life. It was so familiar. I couldn't believe it. I could have written so many of her sentences almost verbatim from my personal experience. I had to stop mid chapter because I was having 'an episode' and couldn't focus my eyes or hold the book up. Apparently my feet were ready to tap dance. After my performance, I finished her words. I cried. There is so much relief in knowing what this is and yet so much fear in all the unknowns. I let go of fear, I return to trust everytime I feel it. Sometimes I do it several times a day. Every case is different. Some people get almost 100% better, some people continue to decline, many women develop MS, many people have irreversible damage, some are better, but not for years. After starting treatment, everyone seems to get much sicker before they get better. That's due to something called the HERXHEIMER REACTION http://en.wikipedia.org/wiki/Herxheimer_reaction.

I had to stop typing just now and put my hair up. Why? Because it smells like feet or garbage or something rancid to me. Yes, even though I just washed my hair and my Mother says it smells like shampoo, it smells nasty to me and makes me feel nauseated. A new symptom on board I guess, an olfactory issue. Many things just smell awful to me and shouldn't. I need to ask my doctor about this. I'm sure it's another neurological symptom.

So, on to the bargain bin. That's where I landed today. I'm desperately trying to hang on to all the normalcy I can. I can pull it off when I'm having decent days. The first part of today was pretty good. And, I am grateful for that.I had just done some shopping at Border's after my Griefbuster's assignment, had my yummy cup of coffee in my hand and was looking for my friend after paying for my items. Now, I'm not exactly sure what causes this, but I have been falling down a fair amount lately. I've always been quite a klutz, but this puts my klutz skills to shame. I usually get a shooting pain through my lower back, followed by what feels like some sort of spasm, and then I have trouble using my legs briefly. I thought my friend was over near the front of the store, so off I went. I was carrying my merchandise bag, my purse, and my coffee, when one of these attacks came on suddenly. I tried to step through it, but it became clear pretty quickly that I was going down, like it or not. I tried to grab onto the Bargain Bin table to stop the fall, but it only slowed it down slightly. I did manage to set my coffee cup on the table before landing in a heap on the floor. I looked up horrified into the many faces of the afternoon Border's crowd. Two large men were sitting in chairs reading magazines about a foot from me. I watched them watch me fall, my version was in slow motion. Their faces were priceless. One of them looked concerned and kept asking if I needed help. The other just looked at me with a suspicious, judgmental look. I really think he suspected drugs. Umm, no sir, just the kind that turn everything orange. No fun there. I knew I couldn't get up right away. That just seems to be how it works. So, I sat and waited while people stared at me and I did everything in my power not to cry. I was sitting on my butt with my legs out in front of me, I knew I had to flip over onto my knees in order to get up. I must've looked like a mentally delayed person trying to attempt yoga or stripper moves. I was just trying to get up on my own. The (nice) big guy kept asking me if I needed help and I just kept politely declining, smiling and twitching.

My friend arrived after the great spill had been cleaned up, but could tell something was wrong by my face. "What happened?" she asked me. "Nothing, just a little one of those episodes like last night by the fire, no biggie" I put my sunglasses on and tried to walk out of the store smoothly. Just as my eyes where beginning to spit orange onto the back of my dark plastic glasses, the humor of it all saved me. I went into hysterics. I could not stop laughing! The whole thing was quite comical. I kept playing it over and over in my mind. And, I laughed on and off for the next couple of hours. Loud, bottom of your stomach pit roars for moments. It felt so good. We all take ourselves so very seriously. That experience didn't & doesn't have to be humiliating, it's funny, it's material. So innnn to the bargain bin I flew... and came out happier. On another bright side, had there been damage to the $1 books in the bargain bin, the cost would've been low.

I was pondering many things this evening and one was this ~ I wonder if some of us have to get ill to remember that we are worth healing and being loved. ~ I do believe that's the case for me. I'm learning to love myself and be gentle with myself in ways I never was before. I have to love myself and be forgiving of my body if I'm gonna get through this. After years of fighting suicidal feelings and doubting myself, I finally have a sense that I really do want to be alive. I like who I am. I want my body back, I want my life back. I deserve it, too. And, I have things to do.

I don't want this disease, I wish I could change my circumstance, but those shadow teachers sure do reveal a lot of light. The greater the challenge, the greater the opportunity for growth.

Much love to any reading this. xo

Disclaimer- I am having problems with my new moments of dyslexia, word swapping and spelling because of the cognitive stuff. I caught several things and ran a spell check, but some probably snuck through.

Clearly, I'm not mature enough....

Truly. I clearly am not mature enough to have a chronic illness. I have been reading in various places about different ways to assist in your healing. It isn't just a new agey, hippy thing to do guided imagery to help during the healing process. It's a well practiced technique by many doctors. You can find it under healing techniques on many different cancer and chronic illness sites. I also read about it in a book I'm reading ~"Kitchen Table Wisdom".

This book kept popping up here and there. It was on the coffee table of 3 petsitting jobs I had one weekend. I have a philosophy that if something comes to you more than 2-3 times, it's not a coincidence. I also know each time I saw it, I was very curious about it and took note. I thought in my head, oh this is another one of those "Chicken-soup for the soul" type books. And, just brushed it off. A friend of mine mentioned the book casually and I was shocked, here's the 4th time in 3 days this book I didn't know anything about prior to this, has popped up 4 times. This beautiful friend gave it to me as a gift. Thank you, Maryann. So, I finally picked up the book and began to read. It's a book written by a Doctor in NY. She's telling the healing journeys of her patients. It's quite beautiful. I now understand why it revealed itself to me a couple weeks before I would get a diagnosis. The book talks about our abilities to help heal ourselves along with the medical treatments. She shared a guided imagery with one of her patients in a session. I read it and figured, look I've got nothing to lose. It can't hurt me, so why not add it to the regime. So, I tried.

You lie down, do breathing exercises, get into a calm state of mind and then imagine going into your body. I followed instruction and got myself super cozy on the couch. I hopped in through my eye, slid down the back of my eyeball and jumped through my brain to stand and look. I don't know why, that's just what happened. Now you color different parts of your body, you pick a color for the sick cells or the intruder that is wreaking havoc and you color them that color so you can differentiate between healthy you and ill you. Now, the task is to create something fierce to kill off these intruders. I don't know, like a lion, or a monster or I don't know. So, I lay there quietly standing on my brain, with my body cells all split into different colors. It took awhile to pick a color for the Lyme and co-infections as I couldn't think of a color I dislike that much. So, I finally settled on a very yellowy "Lymey"green with a bad tint to it. I kept trying to create something fierce, but then I'd see a little monster type guy and his eyes would be all enormous and cute and I'd want to hug him . Or he'd be fuzzy and I'd want to keep him for a pet or make him a character in one of my children's stories. (Drawings to follow). Nope, not that one. Nope, no way, too squishy. Nope, too soft. Nope, that one isn't mean, he's just misunderstood. Hhhhhmmmm, that was obviously not working. I kept trying, until I guess I just zoned out. Then.... I heard it. "You're feeling darkness all around you, the criminals all around you, no use hiding, I'm the dog, the big fat dog, THE BOUNTY HUNTAAAH!" OMG! No, I didn't just do that. All the cute fuzzy animal monster things were looking at me with less than understanding eyes. Really? Dog the bounty hunter? That's my fierce Lyme-killing monster? Uh, I just sent a scary, weird christian guy with the world's worst mullet into my body? And, brought his terrible theme song with. Omg, Is his terrible wife gonna show up wearing giant American flag earrings and running her enormous boobs into my insides? Eww. Why would my subconscious do this? Ummm, yeah, send Dog in to arrest the Lyme, that's awesome, Lana. No, it's not. The theme song kept playing and then I began to giggle uncontrollably. I don't even watch that show. My ex used to watch it and I would sometimes be unable to rip my eyes away from the sheer horror. I sat up and decided that I am clearly not mature enough to do this. Maybe, next time. But, the laughter was nice.

Not today

I woke up this morning and just didn't want to do this. I woke up and the whole left side of my head is hurting. I feel like I have an earache, my throat is swollen and I think something ugly & large is tapdancing on the back of my eyelids. You'd think antibiotics that make you sweat and cry radioactive colors could take care of all of this, but I guess not.

I'm tired. I'm tired in ways I've never felt tired before. It feels like my bones are tired. My muscles are tired. My brain is tired. My mind is tired. I keep telling myself that if I just try hard enough, I can reverse this or stop it. I berate myself in my mind, telling myself to get up and feel better. Man up Lana, push through and go do something fun and productive. I beg my body and it resists. My body reminds me of an insubordinate toddler that will not do what you want it to do. You desperately need to be somewhere and the child just WON'T go. When you try to pull them off the ground, they take all their weight and push into the floor. You need to get their shoes on and they lock their knees, flex their foot and then wiggle away from you. You are not getting their foot in that shoe until they agree to do so. I long for my body to just agree to do so. Maybe, just as with a toddler, it's going to take patience, rest, understanding and work.

My body has not been holding onto minerals, vitamins and nutrients. It was a strange mystery until I got the diagnosis. I guess the stupid little buggers like to feed on those things, in the meantime, it stops me from storing them . Some of these are magnesium, Vitamin D, and iron. I take supplements religiously and hope that this will begin to build up and make me feel better. So far, the magnesium has only raised a small amount and the iron has continued to decline. The powdered magnesium I take makes my morning beverage smell nauseating. I try to ignore it and gulp. I have a full cardiac work-up Monday and more blood tests tomorrow. My hope is that the cardiac work-up will reveal that the heart murmur is due to the iron deficiency and not due to damage done by the disease having done damage to my heart. Apparently Lyme dismantles your immune system, which explains why I have been sick over and over again the last year. I was trying to remember when I started feeling sick this time. I couldn't remember the last time I felt really good. I was ill with what seemed to be an Upper Respiratory Infection from Halloween to February. No matter what medication they gave me, it would just resurface within days if it left at all. I put on my third annual "Dog-o-ween" dog costume party on Halloween and then went in my Dorothy costume to the school in Seaside where I met with one of the kids I volunteer for through Griefbuster's. I had a really strange episode at the school. I felt really nauseous and broke out into a weird clammy sweat. I was getting sharp shooting pains through my head and chest and glads swelled up. I felt so sick that I went straight to Doctor's on duty before going home. I was less than thrilled to find out that I would need a shot for inflammation in my butt. Even less thrilled than that to see that it would be from a from a male nurse... while wearing this outfit. I have a weird OCD compulsion where I have to match my underwear to my scrubs or clothing, so I was wearing blue and white lace panties under the little outfit. Something just felt wrong about having him lift my skirt. Like I should ask him for a tip, or look for a video camera.

This day started months of sickness. I just couldn't get better. I'd feel better for a few days and then be completely sick again. I stayed sick like this through Valentine's day. My neck and back pain was getting more and more chronic during this whole time as well. Then the abdominal cramps came back, the excessive bleeding returned and I felt dread about going in to see my gynecologist. I knew in my heart what was happening. That's when I found out my tumors were back. I just couldn't shake this feeling that something was really wrong in my body. Something under all of this other stuff. I couldn't believe that my body could be doing all this crazy, abnormal stuff without a tangible reason. But, the only answers I ever got were for "idiopathic" reasons and most likely hormone imbalance. That did not sit well with me. I knew on a deep level something more serious was wrong. As the days passed I was having trouble keeping up with my life. I've always been able to push through pain, work even if I'm sick, keep really crazy busy schedules and mangage it all. But, it was getting harder and harder. I was collapsing. And, then just before I was going to go in for my hysterectomy, I collapsed.

Now, I have these answers and am happy about that, but the medications make me feel sicker and the dumb thing is that it is still progressing. Seemingly I have lots of time to rest, but it takes so much energy to be sick that I am always tired in spite it. Looking back, I truly can't remember the last time in my life when I had a day that I was pain free. I really can't. Today, I am just sick of being sick.

I feel guilty even bitching about any of this, because there are people out there much sicker than I am and going through much worse circumstance than I am. I can do this. But, maybe I just needed to vent a little. I sound like a whiner. A friend told me once that whining is just anger coming out of a really small hole. Thinking of this made me laugh. And, I bet people would agree that I don't have a little mouth. Anyway, I hope I'm not angry. I'm glad to be laughing instead of lamenting over my silly struggle. That's a good way to end this entry.

The little things...

I have a little quote I often say, I think I made it up, but you never know. Maybe I just picked up somewhere along the line. It goes like this ~ "The tiniest holes can sink the largest of ships". It may take time, but it is assured. I try to patch all the little holes I see that pop up on this big ship of life. This morning I was contemplating my tendency to be able to deal with the 'big' things in life and my inability to cope with the smallest of matters. I can deal with my dying patients, their grieving family members, the sick and hurt animals I work with, to name a few. People often tell me that they can't believe some of the work I do and how they would just fall to pieces if it were them. I often think that about people who have corporate jobs and how I would react. But, that's a side note. I think I've been fairly calm (for the most) during the onset of this this illness, the diagnosis and even learning that I wont be able to have children. I've tried to be strong anyway. But then it's the dumbest things that I find myself falling apart over. I'd like to claim that on a good day, I can even deal with the big stuff with some grace. But, some places I'm not so graceful are

• Putting on duvet covers
• Untangling Christmas lights
• Tangled cords of any matter - recipe for a meltdown
• Dealing with aggressive drivers (even though I may or may not have a small tendency toward a mild form of road rage myself.)
• Computer glitches and a slow internet connection

Maya Angelou says "I've learned that you can tell a lot about a person by the way (s)he handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights."

Uh-oh. I remember reading this the first time and questioning my value for a moment. Lol. Looks like I have some work to do with the last two things she mentions. I've got the first covered! I adore rainy days. I curl up inside of them and build a fire, or dance under the spilling sky. I've always felt quite comfortable in the midst of a storm. Hmmmm. But, I despise tangled Christmas tree lights and am a terrible person while trying to solve a problem like that! All of this came to mind today when I felt a similar thing happen regarding a fairly trivial problem.

One aspect of Lyme is something called "Lyme brain". It causes short term memory loss, a brain fog, and some scatter-mindedness at times. I've had episodes of dis-orientation. I have even forgotten entire conversations with in an hour of having them. I sometimes go to say one word and a totally different word will come out of my mouth in it's place. I've also had moments of dyslexia. I've gone to initial things and reversed my own own initials. The places in my life where I have been a really organized person are starting to fall through the cracks sporadically.

This morning I mis-placed my phone (If you know me well, then you know that I am attached to my iPhone. I know where it is in relation to me at all times). I was shocked at my reaction to doing this. It was an over reaction to say the least. Granted, my brother was coming into to town to surprise my family and needed to get a hold of me, so losing my phone on this day was especially annoying. I have a feeling though that had it happened tomorrow or yesterday, my reaction would have been the same. I lost it. I felt angry and stomped around at first. I don't feel anger very often, so wasting it on misplacing a phone is rather silly. But,I was fuming. Soon after the anger, came the tears. The orange tears. I sat on the couch sobbing uncontrollably.

After some moments and a little talk from my higher self, I realized this really has little to do with the damn phone at all. It's the little things that can remind of us of the big picture. I just can't fall apart over the big stuff, because I simply can't. You have to keep moving. So, on some subconscious level, I guess we need to still get the emotion out. I suppose I wasn't crying over my phone at all. It was more of a realization that this thing is hiding in corners of my life that I hadn't thought about. I'm learning that I can't rely on myself and things I'm used to, the way I I'm used to it. I have to think about things in a way I didn't before, even the smallest things. I'm learning about myself and what's changing. It's strange. Things have been changing pretty rapidly over the last several months, and now it's on a daily basis. Fear can run rampant in places of the unknown. Right now I feel like I am surrounded by the unknown. We all are, really. But, fear can be an illusion. What's to be afraid of? The Universe has always taken care of me before, I have faith it will continue to do so. I just need to do small things to help it out a little... like double check where my phone is. (You know, it is an iPhone, there just might be an app for that....).

I got out the door yesterday with my sunglasses on, keys in hand, computer bag and purse over my shoulder, ready to go..... I stepped out the door. Something felt odd. I looked down to see bare feet. I forgot to put my shoes on. It looks like 'checking feet' will be on the list too.

Shadow and Light (and shades of orange)

I need to quickly share that amidst the pain and negativity in all of this so far, the amount of love, support and kindness that has come my way has been unreal. I have had people help me on so many levels. So often when life feels unbearable and looks so ugly, the universe will counter with immense beauty. That has already been the case for me. I am scared. I have an illness that is chronic, my life has been altered because of it, and aspects of the future are uncertain. And yet, I have never been so certain of love and it's amazing capacity. So often the shadow teachers are the ones that reveal the most light. I am so blessed to be loved by the people and animals that love me. With that and a little humor, this is easy! I know there are others out there with far worse mountains to climb than mine. Speaking of humor, one of the medications I'm on has the strange side effect of turning my tears bright orange, brighter than Gatorade-orange! I was having a bit of a self pity moment the other morning and realized in the middle of my little episode that my pillow was turning orange from my tears. I got the giggles from how absolutely absurd it was. Just now, as I teared up thinking about all the kindness I've been shown, a little orange tear fell. Heehee. You know, that's kind of punk rock, don't you think?

A brief history of everything....

I found a tick burrowed in my neck around the age of 11 or 12. I remember it vividly, because I was so disgusted by the nasty little thing. I grew up in Pacific Grove, CA, where supposedly we don't have Lyme disease, so no one really thought much of it. My parents removed the tick, I gagged and squealed a few times over my disgust and then it was all but forgotten completely. Or, so I thought.

Now 22 years later, I sit and think back to that day and how profoundly different my life might be had we known that it had infected me and what to do about it at the time. I can't waste time in that place of what if, it's a spiraling energy with no positive outcome. I am here now. I have chronic Lyme disease.

I want to use this blog to share my journey as it happens and to give another voice to this disease, that is so misunderstood, misdiagnosed and mis-educated in the community and the medical community. I'm learning as I go. I have already learned so much. I never could have imagined that this kind of epidemic could be taking place and so many of us could be so completely oblivious to it. But, of course we are! The only reason I know anything about Lyme and the controversy surrounding it is because I got really ill and was having a terrible time getting any answers about what was happening to me, why it was happening and how to fix it. This is very complex, so I will try to give a brief version now and then write more elaborately on the details and emotions of the specific parts of this journey over time.

I have suffered with minor health problems over the years, but always thought of myself as a fairly healthy person. The last few years have been a nightmare in that realm. I have had migraines since I was 12, which I now have traced back to starting around the time of the tick bite. Everything I have endured as far as my body is concerned always seemed to have something circumstantial to explain it away. For example, I have had terrible pain with my neck and lower back which I always attributed to a car accident that I was in during my twenties. I had a surgery on my left foot in 2006 after tearing a ligament. The x-rays revealed that I have an extra bone in each foot and since the injury wasn't healing, the bone had to be removed and my foot was re-wired. I've continues to endure pain in both feet. I always assumed the left hurt from the surgery and the right from overcompensating. The truth is that my feet were hurting before the injury and most likely led to the injury itself. It's no secret that my beginnings were a bit rough, so when I began to suffer from panic attacks and depression in my teens, the reason always seemed to be attributed to my childhood. I worked very hard on these issues year after year and felt dismay and frustration when I would find myself still struggling despite my efforts.

But, the worst trouble began in 2008. I was having severe abdominal pains, cramps and excessive bleeding. I went in for answers. My gynecologist diagnosed rapidly growing fibroid tumors that were rare and extreme. Fibroid tumors are normal and many women have them. They usually grow over several years and women will have one or two. Mine were excessive, numerous, painful and unpredictable. They had grown in just a few months. Within a few weeks, I went from having a flat stomach to my uterus being at the stage of a six month pregnancy from the tumors. Tumor babies. Hhhmmm, not so cute. I was so grossed out and so disappointed. My doctor recommended that I have surgery immediately and biopsy to rule out one rare form of cancer. He also told me that he considered me to be in the top 5 rarest cases he'd seen in 36 years of practice and felt my case was so severe and odd that he wouldn't proceed until I was seen by Stanford specialists. The doctors at Stanford concurred with his findings and surgery was scheduled. I went into surgery not knowing whether a hysterectomy would be performed or whether I had this rare cancer. 6 pounds of fibroid tumors were removed, but they were able to save my uterus and the biopsy came back negative. Yay. I counted my blessings that day. This meant that there was still a slim chance that I would be able to get pregnant and have a baby. I was told by the doctors here and at Stanford that they didn't really know why any of this had happened, but the main suspect was hormone imbalance. I underwent several types of hormone therapy after the surgery to balance my system, but reacted very poorly. In the case of normal fibroids, there is a 50/50 chance that they will return after surgery. However, most women do not require further surgery. They believed that if they did return, they wouldn't return until my late thirties or early forties at the earliest. I was also told that if they did return, they would shrink with menopause. Why I was told any of this is beyond me, seeing as my case was rare in the first place, so why would these generalities even apply to me? The recovery period was awful, but I had hope and looked forward to being a miracle case and proceeding with my life and having children despite the odds. That did not happen. Nor, will it.

I began having more frequent migraines, extreme pain in my body, hot flashes, night sweats, swelling, edema and other symptoms. I was told these all were most likely from my "supposed" hormone imbalance. Just shy of two years to the date of my surgery, I felt pressure in my abdomen that shortly turned into uncontrollable pain. The bleeding issues and other symptoms flared up and quickly got worse, I went back in to get some answers. My tumors were back. They appeared to be rapidly growing again and the ultrasound showed a number of them. At this point, there was no chance of ever having children. If I were to become pregnant, uterine rupture was very likely and could take my life. It was suggested that I have a hysterectomy as soon as I felt ready to do so emotionally. I scheduled the surgery for the end of March with a heavy heart. As the days passed and the surgery date grew closer, my body was behaving incredibly strangely. I was having more widespread pain, exaggerated night sweats, migraines, fatigue and depression. The two weeks before the surgery, I became very ill. I canceled the surgery. I felt on a deep level that there was something much more serious going on underneath all of this and it needed to be found before I could have a major surgery again. I was pale, had days that it was hard to even stay upright, my joints started swelling, and I was having heart palpitations, memory loss and cognitive problems. Rings I had worn on my fingers for 12 years, suddenly wouldn't even slide over my top knuckle. I found myself feeling disoriented, succumbing to uncontrollable crying spells, feeling short of breath and became unable to continue to push through the pain and live my life productively. A heart murmur developed and was diagnosed and blood tests were sent out. I was told that I had an auto-immune disease, but they just didn't know which one. It came back that I was not absorbing or storing certain nutrients, vitamins and minerals and was very anemic. But, NO ONE KNEW WHY. I would give blood, go home to wonder and wait and the tests would come back inconclusive. Except for the hormone tests, those came back normal. Yes, that is right, I have no hormone imbalance. I was tested for everything you can imagine. My first Lyme test came back negative. I now know that you can not rely on the basic Lyme screening a regular doctor will send out for you. They are unreliable and pop 50+% false negatives. I began reading about all the auto-immune disorders and researching about my symptoms. I was feel ling scared, crazy and losing hope that I was going to get any kind of real help. It was an awful feeling. But, I kept at it. The Lyme symptom list looked like a road map to the last 20 years of my life. It was uncanny. In my gut, I felt like this was what was going on with me. And, this is when and how I found the answers to all the reasons that I had not been able to get an answer. The research has surpassed the guidelines written for the medical community, there is a lot of corruption with the CDC and IDSA, most doctors know very little about it and health insurance companies have worked very hard to not have to pay for the treatments. I will blog about the specifics of this soon. With the help personal, dear friends of mine and through the Lyme Associations, I made my way to a Lyme specialist. The full, reliable, expensive (out of pocket OF COURSE) tests were done. They came back positive. I finally had an answer. Treatment is expensive, lengthy and a battle. I will get sicker before I get better for a variety of reasons that I will share, but I am up for the job. The next phase of Chronic Lyme Disease presents like MS, Parkinson's and Lou Gehrig's disease to name a few, I don't have to time to waste. I started treatment last week. I have strapped myself in for the ride. Join me for the humor, adventure and the battle to get my body back here. I'll try not to bore you. My hope is that even one person reading this will see something in it that will answer a question for themselves or someone they love. Maybe it will help someone out there not have to get as ill as I did, before they get the help they need. This is an epidemic. I bet it blows your mind, the way it has blown mine...