Father's Day and other Ramblings

I am nearing the end of my rope. Or at least it feels that way. I think back at the times I felt this way before and I remember that it passes. It WILL pass. As far as Lyme. I don't F$&*@* know. I really don't. I finished IV therapy for now. My bloodwork was still positive during week 5 with everyday IV treatments. "That may be a good thing, it may be a bad thing." Yep, that's the answer I got. It may be because Lyme has a half life and takes awhile to die in the system (good). It may also be that it is becoming resistant to antibiotics (bad). I don't understand it. I really don't. The cognitive stuff seems to be better again :-). The rest is not. I hurt all of the time, have chronic migraines and am really fatigued. I am trying to continue to push through and live life. I have been told that a few other conditions need to be ruled out. So, I have an appointment set up with a specialist. Not till July of course. Grrr. Okay, whining over.

The last couple of years have been so challenging and while I have been very open here about much of it, there is a huge piece I have been unable to share. I have come to a place I feel I am ready to do that.

It was Father's Day this weekend and that was extremely bittersweet. I cried for a large part of the day. And now I will tell you why. Let's go back in time first. I was adopted between my fifth and sixth birthday. I shared on here a couple of years ago about my trip to forgive my birth father. Now I want to talk about my "real" father. I call him that because he is the father that was 'real' to me, that loved me, that made me laugh and feel safe, that bandaged my wounds rather than inflict them, that was a guiding force and a constant strength. I will never forget the day that I first laid eyes on him. I had been told by my foster mother a few days before that I was going to finally get a family and they were coming to meet me. I waited in anticipation and fear. Excitement and dread. While I remember being relieved to have a family want to adopt me, I really was afraid to leave my current foster home. They were my family and I was very attached to my foster mother and my siblings. My birth brother had already been adopted and I questioned why I hadn't been. I wondered what was wrong with me. But, I also didn't want to leave my beloved Mamma Jean, my sister Jenny, and my favorite foster brothers. Anyway, the day arrived for me to meet my new family. Mamma Jean helped me get ready. We chose my favorite dress, pulled my hair up in two pig tails, curled them and tied bows around them to finish the job.I was so nervous. I went up and down the stairs, clung to my favorite doll and waited. When they arrived, I peeked around the corner to see the couple in the doorway and there he was. I looked both parents up and down and took mental notes. But, the thing that sticks out most is the thought that went through my head when I saw my new father. "They found me the PERFECT dad." He was the right age, the right height, he looked gentle but strong, kind, he looked fun and not serious, and his eyes.... His eyes were so full of life. A stark difference from the void I would often see behind my birthfather's eyes. I am just going to share this part of seeing my parents now. Obviously there was a lot going on and much to tell about that experience, but I am just sharing about my father now. I was scared of men after I was first adopted, but I was still very drawn to my new Dad. He played with me. He helped me learn things I really needed to learn, he always told me how much he loved me, he made me feel so safe in a world I really didn't feel safe in. The years passed and our bond strengthened with each passing day. He has always been such an amazing man, balancing out all the negativity that I held about other men and things that I underwent because of them. He helped heal so many wounds. He gave me hope where there was little. I was always proud of him, his heart, his compassion and strength. I still am. I miss him though. Even though I see him constantly. He has slowly been slipping away with an illness. When I came back to Monterey, it was supposed to be temporary. But, when I arrived I knew something was terribly wrong with my Dad. I didn't want to leave his side. And, of course my health became an issue too. I have been helping take care of him over the last few years and it has been a blessing to have the time with him, but a very difficult undertaking as well. He has been diagnosed with moderate to sever Alzheimer's and it is awful. It is unfair. It is ridiculous. I haven't felt comfortable to share in any type of a public forum until now. Part of me just wasn't ready. But, mostly it was because I didn't ever want him to run across it, or for family members or friends to see it and feel upset about me writing about it. Some family members didn't really know. It has been a long, painful, complicated journey. But, everyone knows now. Denial is no longer an option for anyone and I if I want to write about it, I will. I am in the trenches, and quite frankly I feel it's my right to share the experience. He can no longer be hurt by it, because there is absolutely no way he could ever log onto a computer to somehow find this. He can't even turn on a television. So, there is no way that this can hurt him. It's such a weird illness. He knows something is 'wrong' with him, but he does not know he is sick or that he has Alzheimer's. My poor mother. This is not how we planned this part of our lives. What can you do other than just push through and try to make the most of everyday? Humor helps. Sometimes. Some days I just want to pull out my hair. I feel so angry. Anger is not an emotion I have done very well and I have been less than graceful at times. I can not explain the magnitude of watching someone you love slip away, even though they may be sitting in a room with you. People are so weird about it. They act scared when they see something is wrong with him, they often flee as quickly as possible or say stupid things. But, I get it. It's scary. It's uncomfortable. It's sad. There have been some amazing people that have offered a hand, kind words, resources and for that I am grateful. The people who have been through it are god sends. Maybe someday I can be one of those people for someone else. For now, a day at a time is all my mother and I can manage. A week or two ago when I was picking him up from a day program we have him going to, I stood in the doorway and secretly watched him interact with the group. It felt a little like peeking around that corner when I was so young. Getting a look at him in a different light. My heart sank as I thought about 'this' being my Dad. But, then I looked more deeply and I saw that light in his eyes as he interacted with the other people in the group. That life I saw the first day. Radiating kindness. Despite it all, I had this thought again - "I have the perfect Dad". I hate that I can't "fix' him, that I can't undo this. So, what I DO do is - I try to hold his hand as often as possible. I try to put aside my frustration and anger and remember to tell him how much I love him, even if he's driving me crazy :-). I try to remember something beautiful or funny from growing up with him when something difficult happens because of his disease. I am thinking about creating a "memory room" for him and having all the family members write about a memory, give pictures, etc and filling one room with all the happy memories I can. The world is so unfamiliar to him now. Maybe, I can help him feel safe the way he made me feel safe when the world was so unfamiliar to me.

He isn't allowed to as much, but he still takes walks around PG sometimes when he slips out. If you see him, give him a wave. Coach Gardner is in there. He deserves all the smiles possible.

Another journal-like, jumbled entry. I needed to just write the words. To just put it down. I will write more about it when I can. My health is frustrating. Luckily I am finding a way to do things that I love. I am working with a Griefbuster child who is amazing. His teenage sister was killed unexpectedly. I am also helping with an art class for abused foster children on Saturdays at CASA. I am constantly surrounded by animals. Thank GOD! And, I have an amazing companion and a handful of inspirational, amazing friends that help me get through it all. There is so much suffering in this world, but there is so much beauty too. The only way I know how to not go totally crazy over all the suffering is to do something to try and alleviate some of it, in anyway I can. In the grand scheme of things, making dream catchers with children isn't 'fixing' anything I suppose, but hopefully it adds some color and life to someone's day. It certainly does for me.

One last thought- Be kind to one another. I have been dealing with some silly drama in life that seems so pointless, but it does still sting a bit... There is enough pain out there without adding unnecessary pain to others through gossip, negativity and exclusivity. It's just silly.

Here is a picture the day I met my Dad. :)

I'm back

I believe two birthdays have actually passed since I have blogged. I can't give an absolute reason why I stopped blogging, but I can speculate. The surgery was rough. The recovery was rougher. I went into a sort of "warrior" state. Well, that's what it felt like at the time. That I was being really "strong". I think I went a little numb maybe. Perhaps I just wanted to try to get back to a normal life. Maybe I was tired. Tired of Lyme, tired of illness, tired of myself. Or, maybe I started to feel better on certain levels after treatment stopped and the surgery was done. I imagine it was a combination or variations of all these things, blended together. Whatever the reasons, that was what happened. I basically abandoned ship here on my blog...

So here I am. Again. Still. I wish I was writing to say that I am cured, all is well, and I have the answers. Not so much. I am writing to say that I am still in this battle, still struggling, but still fighting! The last year and a half have been very, umm, I don't know. Full. Varied. Confusing. Fine. It's a journey. Let's see if I can back track a little. After the surgery I fought so hard to be strong. To some extent, I think I did a good job. But, I also wasn't capable of feeling everything right away, that this particular surgery brings to the table. I still haven't processed all of it. It's just another way I look at my life and think "awesome, another thing that makes me different". But, I also understand it to be part of my path, understand there is value in it, that it has made choices for me that could have been hard to make myself, and that it isn't the end of the world. I know I am meant to birth other things. Creative things. Projects. Nurture animals and children in other ways. You don't have to be a birth mother of a child to bring motherly, nurturing love into this world. It's odd to be a woman that can't have children in this world. You wouldn't believe some of the things that have been said to me, if I told you. (Sometimes I feel lucky though. Like when I hear the screaming children in a store or when my friends tell me about the struggles they have raising their children.) I wonder if I could have children, would I at this point?? It's a moot point. It seems like there are two clubs when you are in your thirties and forties. Those with kids and those without. With a few exceptions of course. I love exceptions :-) It can be so awkward though. People are always asking me if I have children or if I plan to. How am I supposed to answer that? No? Sure. Except there is such a convoluted pile of emotion lurking behind that answer. It isn't ever really that simple to answer. And, people rarely let it go at that anyway. It inevitably is followed by other questions. Did you always know you didn't want children? Is it because you haven't met that perfect someone? If I answer with "I can't have children" then the faces come. The myriad of pity filled expressions - shock, concern, horror (like it's the worst thing a woman can imagine happening to herself), curiosity, the poor-you face.... It goes on and on. I suppose I could just lie and say yes or say I AM pregnant. But, lying is no fun and then you'd have to have a conversation that isn't real. And, if there is anything I hate, it is not being real. I hate going to social events because of these questions. Like weddings for example. It's such a nightmare and I often just want to hide. I feel like an alien. So different from my peers. Inadequate. And, the questions are always worse at weddings. Are you next? Blah, blah, blah, blah. Ugh. And, Lyme is no fun at these sorts of events either. The seating is always painful, twitching and puffiness don't really accent any cute outfit, and it's another tired and sore subject. So, that answers that. Yes, I still have Lyme.

Still. Again. Whatever. Here's the short version. After surgery I finished my IV therapy. My blood test came back negative. I went on and tried to get back to life. I still had symptoms because of the damage done over the years. Chronic muscle pain, arthritis, migraines, heart murmur, etc. But, the cognitive stuff was GONE. YAY! Or, so I thought. I really was, all things considered, doing well. I felt so much better than I did the months I was basically bed ridden. I felt like I could at least function in life and was excited to start building mine from a different place. I still had sweats and fatigue, but generally that was chalked up to hormone issues because I now only have one ovary. (I am having issues with that ovary and my abdomen now, that I'll share about later. I may need another surgery.) Over the last several months I tried to get back to normal life as much as possible, but I still didn't feel 100% healthy. I kept wondering if I was exaggerating it in my head, if it was because I was lonely or busy or a number of things. I continued to take medications for symptoms, but was off regular IV or antibiotic therapy. I would have arthritis flares with weather, tire easily after overdoing it, and pick up any flu or cold that wafted my way. I was on and off antibiotics, when I would get flu like symptoms. It did seem to be getting worse gradually. And then, fairly quickly, all of the sudden. I broke down in a doctor visit and expressed that I felt like something was really wrong still or again. I was getting several migraines a week, the inflammation in my body was absurd, I was tired. And, the cognitive stuff started happening again in January. We ran a western blot. Positive. Ran a second one in case of possible error. Positive. Shit. Here we are. The newest studies show that it can hide in the heart and that may be what was happening with the negative test results earlier. Anyhow, I am currently undergoing treatment again. Everyday IV antibiotic therapy for a minimum of 6 weeks to start. I feel like someone beat the crap out of me. I am taking a leave from work at the animal hospital during treatment for a few reasons, but most importantly to help with the healing time. I am continuing to do my pet-sitting and mobile pet care as I can. Although, it has been a bumpy ride. I am praying that this round of treatment is going to do the trick. When I feel frustrated about this situation, I remind myself that there is an intelligence to life and that it may not make sense in the moment, but someday it will. I have been feeling the call to blog again, to reach out, to share my experience. The ups, the down, the all arounds. Even if no one reads this, it is therapeutic to journal and to track what's happening. So, that's why I'MMMM BACCCKKKK. I have met another 'alien' and that gives me even more reason to fight and try to be brave and come out on the other side of this. No, we won't be having baby aliens. Please refer to above paragraph ;-).

Some of the things I'd like to address here over the next weeks, months, days are: 1. The continuing fight and controversy surrounding Lyme disease. 2. The damage the New Age idea that we create our own illnesses can have on a person who is battling an illness. 3. The greater purpose of our struggles and what we can learn from them (if we did help create them, why?). 4. How much I want a uni-corn. 5. My developing vision for healing workshops. 6. My deepest gratitude for the people and animals that surround me in my life and the wisdom I learn from them 7. If I can't have a uni-corn I WILL settle for a horse.

As you can see, I haven't changed the form of this blog. It will be scattered, it will be free-flow, little editing, and mostly just like journaling. Just shared journaling. I want it to be open, raw, vulnerable and honest. And, I believe those things come in a form like this. I'll save all the editing and control for my book.

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.