A difficult stretch

I have tried again and again to write since my surgery (12 days ago), but I just haven't been able to. Things have been too jumbled, convoluted, or painful. I lost my 'inner-polyanna' for several days. I don't know if it's been the Lyme disease, the pain or fear of the surgery before and after, or all the medications I've been on, but something has just had me not feeling like myself. I suppose it's all of it. I seem to be on the mend now. Thankfully. Sometimes when that darkness comes, I fear it won't ever leave. When it does eventually lift, I'm reminded that it always does. I try to remind myself when I'm in it, that it will. But, anyone who's been there, knows it's hard to think outside the grip of it, when you're in it. Sorrow, grief and pain are realities and can't just be shut out. But, my hope is to deal with them with as much grace as possible. I have not felt very graceful since the surgery. I've been moody, down and feeling defeated at times.

After the MRI, it was clear that I needed to have surgery right away. They gave me a few days to get the blood work and paperwork done and surgery was on Friday. The largest mass was under my uterus and larger than a grapefruit. The pictures, yes there are pictures - eww), show that it was larger than my uterus itself. The doctor said he stopped counting the other masses at 19 or 20. Many of them were adhered to my organs and intestines. So the surgery consisted of removing them, repairing adhesions,removing the uterus, and removing the left ovary (which was found encased in fibroids and endometriosis). They keep saying that I have something rare, a non-cancer that is acting like a cancer. The pathology showed abnormal cells, but it looks okay. I don't really understand it all. It feel like the doctors really don't either. My outer incision is about 6 inches and similar to a c-section cut, but the inner incisions go upwards and up to my breastbone. I have been very uncomfortable, but adjusting. I tried to do a little too much at first and was sent back to bed. I seem to be moving around a lot better now.


Getting out for some fresh air a few days after surgery


My attempt at humor on my first out of bed outing


My brother showed up in full pirate regalia to see me


Beautiful flowers sent by framily that arrived when I got to recovery

I re-started the Lyme infusions Wednesday after surgery. I can definitely feel the effects of that. Both positive and negative. I've been having insane episodes of sweats and chills. The other morning in a matter of several hours, I had to change my pajamas twice and my sheets three times. I think it's from the Lyme dying off. I suppose it could also be hormonal. I have one ovary now trying to balance all my body's hormones. The hope is that it will be able to do that. I have my fingers crossed. I have noticed a lot of positive changes when it comes to the Lyme disease. I'm not dealing with the cognitive stuff hardly at all anymore, I feel stronger, the pain in my joints and muscles has eased up a little bit, and I'm not falling down like I was. I think the Rocephin by IV is actually really helping. I am still herxing some, the fatigue comes and goes, the headaches are lingering and I just generally have a flu like feeling. I feel hope though. Despite the challenges, there is finally some tangible progress that brings a possible end to all of this in sight. I know that after the iv infusions stop, the symptoms could return, but I'm choosing not to dwell on that possibility. I think one of the hardest things is having a day that feels almost normal and getting excited and then that day being followed by a day I have to stay in bed. I'm tying to stay in the now and just be present with whatever shows it's face that day.

My attempts to stay positive are at least not totally futile. However, I am dealing with some major emotions around the hysterectomy. I felt so powerless around the surgery. I can't believe my body would be growing these things so rapidly no matter what I've done to try and stop it. I had hoped so intensely that the Lyme treatment might repair my immune system issues and stop whatever imbalances were causing all the 'disease'. When that wasn't the case, it was so disappointing. I know that not being able to have children isn't the end of the world, but it is painful. I knew that this was coming and still it felt like such a shock when it actually arrived. I was hanging onto the idea that there was still a miracle possible as long as my uterus was still in my body. The miracle will have to come in another form. I know that adoption is an option. I am living proof that blood and biology do not determine family. I still can't shake the sadness that comes around the subject and I also know that I haven't begun to feel the emotions surrounding it. I feel them coming. As silly as it may sound, I feel like the surgery has, in a sense, threatened my femininity. I worry about all kinds of crazy things. I think it will just take time. Time and healing will hopefully transmute the pain of all of this into something empowering and positive. For now, I have to hang on for the ride and do so with the strength I can muster. In the meantime, I am sorry to my friends and family for the distance, mood swings, impatience with you and myself, and anything else that's less than ideal. Some days I see this illness, these illnesses as an opportunity or a calling. Other days, I feel sad that I'm not the one posting pictures of my adventures, of meeting people, of my pregnancy, my wedding, my children... Some days I feel a little gipped. I am so tired of feeling sick, of being poked with needles, of being cut open, of taking pills, of just not feeling good. I had not imagined my thirties this way. I know there is a light scattered throughout the tunnel and waiting at the end. But, the dark parts are inevitable too. Life never looks the way we thought it would.

About a year ago I did some very intense work around the childhood abuse stuff and had let go of some things I had been holding onto so tightly for so long. I felt so much relief, but there were these places inside myself that had been filled with them for so long. A very wise woman told me that it would do me good to think of those empty places and start to fill them with color and beauty before something else grew there. I see that need now too. My uterus is gone. Parts of my life are gone or irreversibly changed. I feel sorrow. It's important to grieve and honor that. I feel it is also time to put some color there, to birth other things, ideas, projects, art, gardens.... I'm trying.

Facing fear with faith... as best I can.

Today things took a turn. I felt the need to write about it while it is still raw. I was sent in for an emergency MRI straight from my IV infusion appointment. The results were not pleasant. I find myself feeling quite scared and yet a relentless need to stay focused in some form of faith. I'm finding positivity as a key ingredient in maintaining any grounding. Maybe it's a crutch, but sometimes we need them. It's not a Polyanna act, it's a necessity. And, besides even if the positivity can't change the outcome, it can change the day to day experience of the struggle. If the worst case scenario ended up being the result, I still have the days and weeks of hope as the experience that led me there, instead of staying stuck in dread... And, that counts for something, no matter what. That being said, it doesn't change the fact that I do wonder why. I think about the fact that my life seems like in my 30's it should be filled with meeting people,celebrating, building a future.. Not stuck in bed, not worried about these other things.. But, this is my path. That's the reality. So, I will do what I have to do to get to the other side of this. I have to.

The MRI revealed that the uterine tumors have indeed begun to very rapidly grow over the last week especially. A few months ago, the ultrasound revealed a handful of them. Today showed a grimmer reality. There is around a dozen now. There is one that has grown beyond the size of a grapefruit. It is pushing on intestines and causing at least a partial obstruction in more than one place. There is a fluid pocket showing and we are unsure what this fluid actually contains. These things are dangerous. There is some concern that the growths themselves may actually be adhering to my intestines and organs. They also are taking a thorough look at the MRI to make sure there isn't anything else going on other than the Lyme and the uterine growths. It looks like they will have to go into surgery as soon as this week, or possibly next week at the latest. Some of the reasons I have been feeling so sick comes from these toxic back ups in my system. Because of the Lyme infection and treatment, I thought that I was just herxing and that was causing the pain, fatigue, struggle and nausea. Now, I see it was a combination of all of these things happening simultaneously. No wonder. I was trying to be a trooper and just push through it, although it was not coming with ease. I've been doing my best. That's what I've got.

I found myself feeling very frightened tonight. What will surgery entail? Especially with these other variables? What will happen after surgery? I feel like my femininity is being threatened. A hysterectomy at 34? Why, I wonder? I have to come back to faith. I just have to. I have to know that what comes next, I will find the strength to endure it. The original definition of suffering just meant to undergo or endure. It doesn't have to be a negative place, if I change my perception. The last surgery, I went into blindly and then all aspects were surprises. Now I have something to look to for reference, although this surgery is more complex. Especially if they are adhered to organs. They don't know what to expect completely until they get in and begin. So faith is where I must land, even through the fear, insecurity and the unknown. Faith isn't blind, it's visionary. I believe this. I will find out tomorrow when my doctors can consult one another with the MRI results how time sensitive it is. But, I was told today by my internalist and infectious disease specialist to cancel my jobs that are scheduled for this week. It's possible it will happen this week. I will know more tomorrow.

I am learning that being strong, having faith and being positive doesn't mean that fear, sadness and panic aren't there. It simply means you have tools or friends to calm those reactions when they arise. And, tonight I am sad, scared and pretty confused. But, I will use those tools to cope. And, I will remind myself again, that people go through much worse and come out gracefully. Tonight I will sleep with both the unknown and faith tucked in beside me.

A shadow or a friend

I'm not going to lie, this has been a really rough stretch. I am very grateful to have found this new doctor. He is brilliant, a mad scientist of sorts with a resume that impresses and a laugh that can shake the two story building I go to every day for IV infusions. The treatments are seven days a week and take approximately an hour. Instead of placing a port surgically, he opts to just use your veins every day with a fresh poke. He prefers to use the hand veins. I did not take to this well. For some reason my hands are super sensitive and I bruised terribly after the each of the treatments done in them. The actual stick of the needle was very painful and then the entirety of the infusion burned and was uncomfortable. I ended up after a couple of days with both of my hands bruised thoroughly and found myself dreading going in. The needle would come out and I was miserable, the jab into the hand and I felt as if I'd puke, and I just hated it. After some coercing, we moved up and to my arm veins and now I am much happier. The stick is still uncomfortable, but only for a moment and then the infusion is a breeze. The office is full of laughter and silliness and we always tend to make it fun, so that helps. It's the aftermath of treatment that's killing me. I am definitely herxing and it is no fun. I feel like I have a flu on steroids. It's like arthritis, the flu, and food poisoning had a baby. Ugh. I have never in my life felt as fatigued as I do. It's a struggle to do almost anything. I'm trying to maintain my pet sitting and mobile pet care stuff, but it is a challenge. I've had to drop my art class. It's a total bummer, but I tried and at this point in the game, it just isn't in the cards. I keep reminding myself that if I just focus on my healing, I will be able to take all the classes I want and enjoy so many things again on the other side of all of this.

Since day 3 of treatment, things have gotten really hard. I have trouble driving from one place to another, even if the trip is only a few blocks away. Any task is a huge mountain to climb. HUGE. I've found myself having to take naps or lay in the fetal position after 10-15 minutes of doing anything. I have spent all time that I don't HAVE to be somewhere, in bed. Even being in bed is uncomfortable. Every bone and muscle in my body aches, my headaches are almost around the clock, the nausea is relentless and I'm just plain uncomfortable in my skin. I've developed an infection in my throat and mouth from the releasing of the toxins. I've also been having spells of sadness. These waves come over me and I just sort of surrender to them for now. I feel like it's a necessary release. I don't dwell or fixate on it, but I do feel what I need to feel. It's just not a pleasant time. I also have been having intense abdominal pain. I have been able to feel the uterine tumors by palpitating my abdomen for some time now, but this week they have taken a turn for the worse. I often have take baths in the middle of the night or early mornings to alleviate the muscle and joint pain. The other morning as I was laying flat in the bathtub, I realized that my abdomen actually looks misshapen and you can eye them now. I had an abdominal exam as this concerned me and they have grown substantially in a matter of a week. It looks as if they are actually rapidly growing the same way they did two years ago. They have been quickly growing for some time, but this is back to the record breaking growing by the looks of it. My Dr. believes they need to be removed now. It looks as if we are not going to be able to wait till the 42 days of IV treatments are complete to go ahead with the surgery as originally planned. It's looking like I will need to get in for surgery sooner than later and the IV treatments will just be given to me in the hospital to keep up with my treatment plan. My doctor believes that the tumors have now caused a partial obstruction and waiting any longer is dangerous. This may be the other reason I have been feeling so horrible this last week. I have an MRI scheduled for Tuesday. He wants to get a clear picture of exactly what's happening in my abdomen and make sure it's nothing more than what's suspected. Besides, they will need an MRI no matter what to map the surgery. So back into the MRI space machine to sit motionless for what feels like forever, for the 4th time in my life. Grr.

Now, on to the good news... Feeling really sick during treatments most likely means that the infection is being killed and the little nasty spirochetes are dying off. Yay. It's nice to be able to stop when I'm feeling like I've been hit by a bus and remind myself that this points to progress. I have also been reading a lot and strengthening my spirit as much as possible. I'm finding strengths inside myself I didn't know I had. Ideas are coming up for creative projects and I see the light shining brightly at the end of this ridiculous tunnel. On days when things feel unbearable or overwhelming, just the right person calls or I open a book to the right page and am reminded to readjust my thinking. This is an opportunity, not just an illness. I feel an appreciation for my body now that I didn't have before. I don't think I will be taking things for granted anymore. I have no desire to self destruct or escape in unhealthy ways. I see the beauty and gifts a healthy body offers. And, when I have mine back, I won't take it lightly. When I'm well again, I think my life is going to take off in ways that I hadn't imagined. I feel good things coming and I trust it.

I had a lovely experience this week with a hospice patient. She's a cat lover and really wanted to see a cat. So, I was just the volunteer for the job. Her cat had died and she's now been placed in a convalescent hospital and can't get another pet. I managed to muster the energy and take Bob the cat to her. Her face lit up when we entered her room and she cried at the sight of Bob in all his shiny black fur. She looked so sick of being stuck in her room with the repetitive TV buzzing noises at her in the background. She seemed depressed and lonely. I related to her in a very small way. It was amazing to watch a light come into her eyes that wasn't there and then to see the exchange of love between her and Bob. It was some of the best medicine I've had all week. She asked me to come back, and I'll keep that promise. I also had the opportunity to speak to the new hospice volunteers in training this week. It was an honor. It felt good to get out of myself and although lyme was there in the room with me, it wasn't the focus. I shared with them (and reminded myself) of the great gift there is in helping others. In some ways it's a very selfish act, because you always come away with your heart feeling a little fuller. Filling your heart when things feel dark is imperative. It keeps you from sinking into a dark or numb place for too long. It allows you to practice compassion with yourself and others. They can give me all the medicine in the world, but the true healing comes from the help, hugs, support and laughter of my loved ones. Everyone deserves to have that. It's a rough world, but it's not hopeless. I feel like this world is in such a bizarre place right now. It seems like there is a train of destruction moving full speed in one direction. We need to move another train of compassion and change full speed in the other, no matter what our struggles are. And, ironically, it is often our struggles that give us the ability to get on that train. My sister in law sent me this poem this week and I felt such a resonance with it. It had me in tears. It is simply beauty and truth dancing through words. It reminds me of the Kahliil Gibran quote from the Prophet, "Joy is our sorrow unmasked". I wanted to share it with you all in case you feel the resonance as well. Please be well friends. I love you.

Kindness

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.

Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.

Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and
purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.

-Naomi Shihab Nye

A new phase

I saw a new doctor today. I am split in my reaction to this new information and phase in treatment. This Doctor is an MD specializing in infectious disease and internal medicine. He has recently relocated to the area from the East Coast and is very versed in the area of vector borne diseases and has an unbelievable wealth of information relating to Lyme and Lyme related illnesses. He also takes insurance! Hallelujah! It was both hope inspiring and disconcerting. He feels I have not been getting adequate treatment. That being said, he did not feel that there was any ill intent on the part of my previous doctor and felt that she had tried to help me, but that her treatment regime was lacking at best. And, lacking because of the medical training and information offered to even the doctors trying to become Lyme literate. According to him, all of the IM shots that I have been enduring the last several months were essentially pointless as they do not have the power to deal with an infection of the caliber I'm dealing with. He feels that I should have been treated via IV antibiotic treatments long ago, and especially since my blood test results showed positive Lyme blood results months ago. He explained to me that the dosage of the meds, which have felt a little brutal in their administration were far below anything that could adequately deal with the level of illness. I have been getting 1 gm of Rocephin reconstituted into 4.2 mL of lidocaine and injected into my glut muscle every 3-4 days. He claims that the minimum treatment should have been 2 gm of Rocephin administered via IV DAILY for a minimum of 42 days. He says that no serious infection can be treated with oral antibiotics and that IM shots can not deliver the medications to the needed systems of the body. The medication can not get to the brain or blood to kill or keep the infection at bay. He also felt many of the prescriptions and supplements I have been taking have been causing their own side effects and some are flat out just dangerous drugs. He advised me to stop ALL medications at once, except the meds to deal with pain, muscle spasms and anxiety. Wow. The thought that I have been ingesting pharmaceuticals on a daily basis that have been compromising my health is frustrating. The preceding days have been filled with extra ailments, including severe abdominal distention and pain and relentless fatigue. He warned me that my lapse in productive treatment has sent me back even further and said there is still a strong possibility that the treatment will fall short of 'fixing' me. This illness has the potential to stay chronic, but he has hope that I may respond well and have relief from the pain and other symptoms. I am willing to float through on these wishes. What other choice do I have? I start a strict regime of IV treatments tomorrow. I will have to go into the office 7 days a week for IV infusions of the drug for at least the next 42 days straight. This will take a huge commitment on my part as I can not skip even one day of the treatment. The plan is that after 42 days of treatment, we will re access. If I have relief, we will stop treatment and see what my body does. If the symptoms return, we will either continue IV therapy or he will decide that we may be dealing with even other types of illness and will begin a new screening of other kinds of illnesses immediately. He confirmed that the hysterectomy is inevitable. His hope is that we can put it off until after the 42 days and then move forward with the surgery then. In the meantime if the abdominal pain and distention get worse, or if I begin to hemorrhage again, the surgery will become an immediate need and the IV treatment will either be done during my hospitalization or put off till after my release from the hospital. He wants me to bring in every bottle of medication prescribed up to this point. I am anticipating the look on his face, when I wander in with a Santa-size sack of bottles. It's really quite absurd. Maybe cutting all these oral medications will cut down the nausea and vomiting. God, I hope so. What a bonus.

This doctor had actually retired and decided to begin a quiet life, when he had the feeling it was not the right thing to do. He had relocated from the east coast to this area with his sick wife to concentrate on getting her healthy and beginning a new life. But, upon arriving in the area he had a nagging feeling he needed to be working and also was battling some boredom. He set up shop to run a small clinic and found himself swamped with cases of people in dire need of help. He told me that he had not planned on stumbling upon an epidemic with such need. So now he is spreading hope and catering to our needs by working 7 days a week to treat us appropriately. The IV treatment will hopefully stop the need for a surgical port to be put in, which can have major complications and the cost is sky high. What a blessing.Now, let's just hope my veins hold up. Seriously, I don't know how I have the luck I do. How I found him, was able to get in and was able to get some possible real answers to my problems, is beyond me. But, I am grateful.

He is concerned about the health-care situation in the state of CA for people suffering from Lyme related issues. He educated me about a little known fact concerning a strain of the borelia bacteria found here on the west coast, It is a different strain of borrelia and he says the system is not searching and treating for this epidemic. This form of borellia is transmitted by a different kind of tick, known to feed on small animals, like squirrels and rodents. Ick. How gross. I feel gross in even saying these things, but really there is no shame in it. We get bit by ticks when we live in wooded areas. End of story. At the beginning of next week, I will be going back in for MORE blood draws and tests. He says what is happening is criminal and when looking at all the evidence, one could safely come up with the assumption there are health-care officials that find it profitable to keep patients sick and use it as a platform to sell supplements and profit over the suffering of people.

My new treatment starts tomorrow. I can't imagine what the veins in my hands will look like after weeks of daily pokes. I hope I am still able to paint with the injection sites and the swollen joints.

Up till now, I have felt that treatment has no end in sight. Now, at least, there is hope for an actual break or end in this grueling process. What do I have to lose? If it doesn't work, then on to the next phase. This gives me something to hang on to, and I need that. I really do. I am having trouble trusting professionals and knowing who to put my faith in, but because of his credentials, his concern for the patients, his willingness to do the insurance billing, and willingness to work 7 days a week to help us, I am impressed and hopeful. I woke up this morning, crying in pain and with a fever. I Had a very long day of jobs and doctor's appointments. Once I finally stumbled into my bed around 7 pm, I fell in and out of a deep sleep, waking drenched from sweating episodes and having muscle spasms. One of the dogs I am currently taking care of was weighing heavy on my heart. She has kidney issues and has been having trouble not peeing in the house. She feels so ashamed when she does, that she hides and has such a look of remorse. I decided to get up and head over there for a visit, on me, to let her relieve herself one more time before morning and give her love. I felt so much better and rewarded myself with a snack pack of nutter butters and a blogging session to get this all out. I know the intensity of this treatment will be challenging and that I have a very busy week to make money to keep paying these crazy bills, but I know I will be given the strength to walk through it as best I can. I really do appreciate the chance these struggling times give us to prove to ourselves what we are capable of. It is absolutely an opportunity to show ourselves what we are made of. It is low times that the power of the universe, god, a higher power, whatever you want to call it, has the chance to break into your life. I feel a need to give back this week, because I have been receiving so much love and support and because it feeds my soul. This next week, I will be seeing one of my griefbuster kids, speaking at a hospice volunteer training workshop and taking a cat to see a lovely women in a convalescent home (she's a cat lover and has requested a volunteer to bring some fuzzy love to her). Something tells me this work will bring even more healing and strength to me then the 22 ga needle with the IV drip coming into my life tomorrow.

But you don't look sick and other ramblings....

So a few months back, I was looking online for a 'lyme-awareness" t-shirt. While searching on Cafe Press, I came across a t-shirt that said "But, you don't look sick" and several other shirts with similar messages. I thought that they were odd things to wear written on a t-shirt and wondered why anyone would. I now understand why people created them, although I would still never wear the shirts. Shortly after being diagnosed, I took to the Internet to find support and answers. In that search, I came across stories of a few well known people that are suffering from Lyme disease. Two of those people are female authors that I have great respect for. Amy Tan (author of The Joy Luck Club) and Rebecca Wells (Author of The Ya-Ya Sisterhood books). I remember relating to their words even though I had barely begun my fight in battling this disease. Now, I am recalling that in both of their accounts they mentioned how people were constantly pointing out how great they looked and how they didn't look sick, even though they felt terrible. I didn't quite understand why this was important. In the documentary "Under our Skin" one of the women, Dana, talks about the wide range of outer appearances of Lyme patients. Some people are wheel chair bound while others, as she put it, are the walking dead. These people look totally normal and yet are experiencing great struggle in their bodies. Right now, I am one of these people. I do have times where I am pale from anemia, am puffy from inflammation, times where I am falling down or tremoring and it is obvious. Much of the time though, I look very normal. In fact since treatment started, I often look better than I have in a long time. The antibiotics have cleared almost every blemish from skin, have caused my hair to grow thicker and stronger, make me sensitive to the sunlight creating a tan after only minutes in the sun. People are constantly saying how great I look and say 'I'm glowing'. I appreciate the compliments, even though I often feel horrible on the inside. What I don't appreciate is when the compliment is given with a hidden judgement. Rebecca Wells wrote about the same experience. Why does this matter you may wonder? Well, because it is really hard to be battling chronic pain, troubled organs, horrible headaches and to have people look at you like you are trying to get away with something. There is this hint of doubt when they are pointing out how 'good you look', instead of an offering of a real compliment. WHY WOULD ANYONE WANT TO BE GETTING AWAY WITH THIS? That attitude nurtures that voice that still sits inside of me thinking that I can somehow stop all of this by willing it so. Those "it's all in your head' thoughts return even though I know better. I still have moments of feeling like I could will it all away. And sometimes I try, with not so great results. I end up wearing myself out completely. It sets healing time back when I try to live like a person who doesn't have limitations, when I do. I don't have to be defined by my disease, but I do have to take care of myself with awareness of what my body can and can't do. I'm working on not letting other people's ignorant assumptions affect me., but I do still get my feelings hurt.

I think it's great that there are positive benefits to the treatments. I don't want to look sick. I like that my skin is clear, that I can tan easily, that the puffiness is better than it has been. I wish others would not point it out to me like I'm trying to get away with something though. Seeing the t-shirts online makes me realize other people are irritated by this same problem. I think wearing t-shirts like the ones below is completely over the top, but I suppose I get what would push someone to that point.








I don't mind being reminded that other people have it way worse. I remind myself all the time. I think it's a good thing to put things in I also think understanding that 'this too shall pass" is a beautiful reminder and very true. I am, however, a little tired of the nap comments and working comments. I am still working as much as I can. There are many days that I would take a terrible day at work over being nauseated and in intense pain. I'd just like to urge people to think before they make comments. I'm only posting these silly shirts because I find it pretty interesting that this is a pretty wide spread thing people with chronic illness face. I think educating people in a compassionate way is far better than wearing a ridiculous shirt that really just makes the person look crazier to the outsider. I also think if someone is mentally ill enough to make up a chronic illness, they too need help and not condescending comments. Awareness and education are the key.

I got bit by another tick this past week! Yep, really. I am starting to think they are hunting me down. I immediately got a reactionary rash covering my leg, but it went away within hours. My doctor wanted me to get the tick tested, but I soaked it in rubbing alcohol and ended up drying it out before I knew she wanted me to do that. I hope that the 4 insanely strong antibiotics I'm already on will take care of any possible exposure I may have had.

This illness and experience has really calmed me down in so many ways. I really feel like I am seeing things in a better perspective. When you struggle to do just the normal every day things, you realize that energy should not be wasted on the trivial things. I see the way people create unnecessary drama in their lives and expend their energy in unproductive ways. I also have become aware of the places and people I have wasted energy in and on. I have a limited amount of energy now, so I choose to spend it in places that are worthy of it. I have a lower tolerance for other people's unhealthy b.s. I may struggle to do everyday things, but I have a clarity I didn't have before and I'm thankful for it. That's one of the blessings of all of this. Clear skin, thicker hair, better parking places, and a new lease on life are a few more.

You don't look sick, but you are.... So conversely, I have started to be aware of people who are not battling a chronic physical illness and are living, by choice, in really unhealthy ways. If you have your health, please appreciate it. Maybe take a small lesson from me and realize without having to get very ill, what a blessing life and health are. I suggest not sweating the dumb shit, being grateful for your healthy body, not polluting it with unnecessary toxins or other people's drama, and using your energy to do something you love. If you feel stuck, seek out support and help from places that nurture you and break old patterns before you make yourself sick. If you don't have physical limitations, don't live like you do! You don't have to. That is a blessing. Live it.

Beauty and struggle

The last few weeks have been riddled with ups and downs. I'll start with the ups. I am constantly shocked at the capacity of the human heart, even though I know it's complexity and beauty. This blog must start out with my immense gratitude for the benefit yard sale that was put on by my amazing friend Jamie.

Jamie and I were inseparable for a good amount of our middle school days. I remember the fun we had, the noise we made, the trouble we got ourselves into and the energy we were able to expend on an around-the-clock basis. Jamie and I have not spent much time together in our adult lives, but have run into each other here and there over the years. She beams with energy, has a booming laugh and a strong personality. She's constantly working on herself and dealing with the things most people don't have the strength to face. I was surprised when she contacted me on Facebook after reading my blog and said she wanted to do something to help. She came up with the brilliant idea to do a benefit yardsale and donate the money to help me with my medical expenses. It could not have happened at a better time, as my bills are piling up and my insurance payment alone is $1000 a month. It seems that just when I start to panic, something beautiful shows up. I'm learning to skip the panic all together and rely faith. I'm working on it. Jamie saw a need and wanted to make a difference. That is beautiful. And, it is rare. I can't even tell you the countless hours she put in organizing the event. She drove all around picking up stuff, stored it at her house, organized it and ran an all day sale. She was so enthusiastic, selfless, and hardworking. I watched her at the sale juggling a billion things, dealing with difficult people and still checking in on me throughout. She moved with absolute grace and dedication. And, all for someone that hasn't been actively in her life in a long, long time. She did it just because she wanted to be of service and wanted to make a difference for someone else. She made a huge difference in my life. Huge. Many people donated items. I was humbled, touched and overwhelmed. Thank you to everyone who was involved. Words can not do my gratitude justice. Even perfect strangers donated huge items. I was given things to help with my treatment and healing, including the most comfortable bed on the planet. It allows me to lift my head and feet and helps with chronic pain. The first night I slept on it, I slept for several hours without waking up, which is unheard of these days. The yardsale was a total success and it was such a relief to go to my multiple appointments on Monday and know that I was able to pay for them without worry. I am a lucky girl.

The downs.
My appointments were a little rough. One of the big hopes was that with the Lyme treatment the uterine tumors might stop growing. I was really holding on to the possibility that I may be able to avoid a hysterectomy if I could get my immune system functioning better. But, it did not happen that way. The exam revealed that the tumors have, in fact, grown over the last few months. The largest one is occupying a major portion of my lower abdomen now and creating some complications. The hysterectomy is inevitable. My gynecologist says that I can wait a little longer, but the longer I wait the more complicated the surgery will be. If I wait too long, it may become a sudden need. I'm under close observation. I will begin seeing my new doctor on the 10th. He is an infectious disease and internal medicine specialist. He just moved here from the east coast and has experience with Lyme disease. I am so relieved. He even takes insurance which will be helpful. He and my gynecologist will decide together the timing of the surgery. I still was holding onto the hope of a miracle and conjuring up dreams of being the girl that wasn't supposed to give birth, but somehow still would. That is officially no longer a miracle I will see.

I started several new meds about 3-4 weeks ago. I was on oral antibiotics, several other meds and supplements and getting one intramuscular shot a week. That shot was pretty hefty, at 2+ mL into the muscle every seven days. The new intramuscular shots are even heftier. It's a stronger drug that is more specific in the way it hits the body and attacks. The drug itself burns quite a bit and is reconstituted in lidocaine. The volume is 4.2 mLs into the muscle twice a week. There's no getting around it, it just sucks. The lidocaine is supposed to numb the area, but really just stings and isn't any better. It's such a high volume and given so often that I am struggling with it. My muscles don't really have time to recoup before the next shot is due. I am going to have to have the port and PICC line put in soon. I was hoping that they could possibly do both surgical procedures at once and avoid having to have two surgical procedures and hospitalizations. But, I guess the insurance company frowns on double procedures and is making it impossible to combine them. You'd think they'd like the fact that they wouldn't have to pay for two seperate anesthesias and hospitalizations. Thank god I have loved ones and this amazing bed to help me through the surgeries. The new oral meds are also taking some getting used to, but I am putting along and making do.

The new drugs are rough on my system. There's no getting around it. I have been in bed quite a bit. The good news is that the shittier I feel on them, the better the sign that they are working. I have to keep focusing on the positive and remembering that they are working and that light at the end of the tunnel is shining. I am incredibly fatigued, have lots of muscle spasms, joint flair ups, and tons of nausea. After attending the yard sale, I was in bed for 17 hours straight. I asked my doctor who on earth has to go to bed for 17 hours after a yard sale (and I wasn't even the one doing the work!) Her response was simply "Lyme patients", with an understanding smile. I'm not used to being so limited. I miss the days of a billion responsibilities. I used to just hop from one job, volunteer assignment, social engagement to etc, to the next. I have had several crying spells since the new drugs started. I can't tell if it is just a side effect or if I'm experiencing lyme induced depression or just depression brought on by my altered life. I just go with it. My jack russell has a new trick to help. When I cry now, she cries with me. It is totally absurd and makes me giggle, often pulling me out of my funk. It's too bad I can't do an impression of how she sounds in this blog, because it is so silly. I love that I find myself laughing and rubbing her belly and pulling out of the crying spells. It's the little things that so often make the big differences.

I started my art class. The teacher made an exception and let me into the already overflowed class. It's a challenge with the body pain and cramping hands, but it is worth it. It feeds my spirit. I love painting and creating. I have already fallen down in class and watched the shocked faces and whispers that followed. Today, I had my shot done and then went straight to class where I began to have a herxing episode while working on my painting. I managed to get myself into the back closet while tremor-ing to hide till it passed. When I emerged from the closet, there were staring, concerned faces pointed in my direction and some questions from curious classmates followed. One guy actually asked me if I was having withdrawals! Haha. I hadn't thought of it looking that way. I explained to him what was happening and reassured him that I was fine. One difficult part of all of this is watching the people I love worry about me. I know it looks scary and is hard on people. Last week when I was up North, a very good friend of mine got very upset watching me herx. I want people to know that I am okay and that it probably looks a lot scarier than it is. I wish this didn't have negative effects on my loved ones too. My Dad looks so worried sometimes and I can see this ache in him that I long to take away. It is worse than the actual symptoms sometimes.

Despite the struggle, I see all the beauty and I am trying to stay focused in that direction. That's what matters. Life could be so much worse and in the grand scheme of things, this is not so bad. I'll keep fighting. With friends and support like I have, I have so much to fight with.

Fighting apathy

I've been pretty exhausted since returning from my Southwest journey. It's been pretty grey and drizzly lately, which seems to match my mood, this morning especially. It has been a bit of a challenge lately to keep my energy up. Somedays I just feel apathetic. I hate apathy.

I know it's not accurate, but I feel like life is passing me by and I'm too tired to jump on. It's hard to determine where one thing ends and another begins. Am I fatigued from Lyme and treatment? Am I fatigued because I'm depressed? Am I depressed because of the Lyme and treatment? But, I feel stagnant and I don't think that is the answer. On days I feel better, I question the days that I don't. I know it sounds strange, but it's true. On the days I feel awful, it's clear there is no other choice. Those days are consuming, but they are at least clear. I think the worst days are the in-between days. The days that I am low on energy, lacking in inspiration, and don't feel good enough to get up and go are the hardest days. Because, part of me feels like I need to just pick myself up by the bootstraps and push through it. I feel lazy on those days. Lazy is unacceptable. I hate it. On a deep level, I know I am not lazy and that this is all part of this illness which hits physically, emotionally and mentally. I decided yesterday to try and counter this stagnancy and depression. I made a choice to at least take a class or two at MPC. I was doing really well in school 2 1/2 years ago when the tumors came on and I had to quit school for the surgery and healing time. I have been feeling bad about it since it happened. I really do love school, but every time I've been doing well and pushing forward, my body has crashed in some way and I've had to put it off. Now, I know what exactly the challenge is. That at least disempowers it on some level. I know any class, even if it's something I love, will be a challenge while I'm treating this disease, but I have to at least try. Keeping some level of normalcy is my saving grace. Petsitting, art, volunteering, and these classes (hopefully I'll get in) help sustain self worth. They keep me from sinking totally into the illness or the depression from the illness. I need a little inspiration. I also find when the apathy or depression sinks in, it is time to get to gratitude as quickly as possible. I make gratitude lists. It keeps my focus in the right place. And, honestly, things could be so much worse. My problem is quite small in the grand scheme of things.

I saw my doctor a couple of days ago and we made the decision to go to the next step in treatment. My body seems to be getting used to the medications I have been on and it's time to introduce some new antibiotics to my system. I have opted not to put in a port and picc line at this point. I am going to try increasing the intramuscular shots and oral antibiotics for the time being and see how my body does. Hopefully the nausea will be better on the new oral antibiotics. I know that this next level of treatment has the potential to make me really sick. Ironically, the sicker I get from the treatment, the better it's supposedly working. We'll see. I will also be starting a new medication to counter a possible side effect of one of the new antibiotics. I find it strange that the medications I will be taking to get my body back are also damaging to my body. This particular antibiotic sometimes does damage to the gall bladder and a medication to counter that is needed. A couple of my new meds have the side effects of joint pain and tendonitis. Since those are symptoms that we are also treating, it just seems silly. There are so many parts of all this that are just that, silly. It reminds me of the depression medications that have the side-effect of suicidal thoughts. Seems contradictory.

I found out a couple of weeks ago that my insurance is going to be cancelled unless I can come up with $1000 a month to keep it going. For now, I can't lose it. I wouldn't be insurable by any other company right now. The donation site and a benefit yard sale that my sweet friend Jaime is putting on for me is going to be so important. Every little donation helps. I'm working as much as possible too. I keep telling myself to keep the faith. Even when it doesn't feel like it, the Universe always takes care of us. It may not always look like we thought it would, but it's always enough somehow. So when panic sneaks in, I kindly tell it to go away.

I don't know exactly why, but upon arriving to my doctor's office this week, I felt like weeping. This strange sorrow just sweeps in sometimes and takes over. Last week I went to Ivy's house after she had a surgical procedure just to keep her company and help in anyway I could. We basically sat on opposite couches and watched TV. But, at one point her kids had a little spat and I went back to their room to mediate. Ivy needed to stay down and rest. We worked out the small issue they were having and just before I was going to leave the room, Oliver (her 4 year old) reached out for a hug and crawled into my arms. His little head rested on my shoulder and I just held him. It was probably 5 minutes of just quiet cuddling. There was something so sweet about it. Something so real and gentle. As I held him in my arms I remembered that I'll never have my own child and I was filled instantly with that sorrow. As that sadness hit me, I allowed it just to be. It's real. After a few moments, I shifted my focus back to acceptance and faith. If I am meant to have a child, one will come to me. For now, I am grateful for the moments like that, the moments I get to hold Oliver or my niece, or the other children who come into my life. We weren't all meant to be the same kinds of mothers. We can nurture and mother in other ways. I do so with the animals I work with, the children I work with and the little moments that come to me. It's important to feel the sorrow, but it is important to shift perspective too. There are so many places in this world that need love and nurturing. It's arrogant to think we know exactly how our lives were supposed to look and to refuse to love despite the cards dealt to us.

This week as I sat on the table in the doctor's office gripping a handful of new prescriptions, I was feeling overwhelmed, scared and quite frankly, just sick of it all. As my doctor was leaving the room, I called out to her and asked, "Do you see this illness leaving me anytime soon? I am really tired of it and I want to do other things." She turned around with a quiet knowing look and responded "I'm sure of it, you won't stay here long." I hope she's right. I know I have been told I'll be battling this for years to possibly the rest of my life, but I don't have to create that. The truth is no one really knows and everybody is different. I'm battling it now, but I hardly plan on letting this take over years of my life. I'm gonna take my life back in small ways for now while I battle it. I take a little piece back each moment I accept a challenge and fight apathy. I take a piece back when I take a class, go on a trip, take a walk, create a painting, read a book, write my blog, and especially when I practice gratitude instead of self pity. I almost lost the beauty of Oliver's hug by focusing on what I didn't have, instead of the sweet moment I was actually having. I need to apply this to life more.

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.