Thursday, November 3, 2011

Unspoken

You were only here for a moment,
I wanted you here forever,
You are my unspoken hurt.

You were a part of my future plans,
I saw you as the missing piece to our family,
You were my unspoken hopes.

You were the vision in my husbands eyes,
I saw you as our future daughter with curly hair,
You were my unspoken dreams.

You were the perfection,
Between husband and wife,
You were the sum of our essence and love.

So why did you have to go?
I will never know,
But I will remember you forever.
I hope God will keep you safe,
Until I see him face to face.
You are my unspoken child in heaven.

Sunday, October 30, 2011

Dirty Side of Life

Things were never suppose to go this way,
They were never suppose to end,
I imagined them differently,
But they changed so suddenly near the end.
I had no time to change my course of action,
I couldn't move from the path I was in,
I saw the collision coming,
I could only close my eyes and stand,
That's the dirty side of life.
Watching the storm roll in without bein' able to move.
Alls your left with is the broken pieces in your hand,
With no where to go,
Who would understand why you didn't move?
Everyone.
(country song)

Friday, September 23, 2011

The Mystery of Life


Don't under estimate misery's blade,
It can teach you to stand,
On one leg.

Don't under estimate disappointment's sting,
It can teach you to hope,
With half a wing.

Don't under estimate grief's torment,
It can teach you to be joyous,
When nothing is left.

Define your life with what you have left,
Not what you have lost.

Monday, September 12, 2011

Rebuilding


I am not used to these new boundaries with my health. I can walk up to two miles in a day and the next day I am not in horrible pain that sends me to the couch for days. I am tired a lot and still need some B12 shots. I didn't realize that its common with Celiac to have low B12 and low Iodine. So I have been trying to supplement those and get them from my food. Now that I am homeschooling my son this school year and coaching his soccer team, I can officially say I am doing more than I ever have in 4 years. I keep surprising my family and friends by choosing to walk around town to get places. I have never really been like this and would find a way to get out walking. So I have surprised myself and walking does help bring down the stress. I still have the age old problem of finding time for me. I do have some great support in the homeschooling community and online with my wonderful Lyme friends. It breaks my heart that there are so many people sick. I am getting questions now more and more from parents with kids who were given only two weeks of antibiotics at the initial bite. I am still researching, learning and listening. Sometimes I wonder if it will ever be enough. I am actually starting to see some longevity in my new positive health. I never thought I would be a person who would willingly take so many pills but even with my Lyme pills being downgraded. I still take the basics like multivitamin, probiotic's and so on. I still need good sleep but I think that's more from the higher level of activity than anything else. I still feel like I can move forward but I keep wondering if the Lyme will come back. So far so good. My skin still breaks out quite a lot. I have tried reducing the cow dairy which has helped my stomach. But my skin still isn't recovered yet. The Evening Primrose oil I noticed has calmed the red patches of skin and made my hair more shiny which I like. I don't think all my health problems will just dissolve away with no permanent problems. My hormones are still wacko. I am doing my best to balance them again. I think it will take time to get them back under control. Some of my herbal teas have helped. I have never been one to like tea but the herbal tea has been nice before bed. It has helped me to unwind and sleep a little deeper I think. I will be curious what things will be like in a year from now. I still feel like I am rebuilding my health one brick at a time. I plan to cherish my good health this time instead of taking it for granted.

Tuesday, July 26, 2011

Aiming for Perfection


I've been seeing my Naturopathic Doctor for a few years now and the last time I saw him we were talking about my current symptoms and what we wanted to work on next. I told him how fatigued I was so later during the visit he took my blood to test by B12 levels, candida and a few other things. I told I was fine with trying to get my health as close to normal as possible and I would take whatever I could get. He looked at me and said,"why not aim for perfection?" He kinda took me off guard. I never thought with Late Stage Lyme Disease there was a complete recovery. I always thought I would only achieve some normalcy but that was it. I would always be struggling with my health bottom line. I thought I had to be okay with that. I told him perfection would be nice, my heart and mind were not behind that conviction that I could be truly healthy again. I took this piece of wisdom with me and mulled over for days. Could I really get better? Is that possible? We did find out from the blood work that my B12 was low so ever since I've been doing the shots. Ever since then my body has been able to take a lot more busy days and keep going without pain a few days later. I have never had so much energy in my whole life. I have been off antibiotics now for 3 months and I still take my herbs for immune system support. Other than that I've started walking 2 miles every couple of days. If you don't know me personally that might not sound like a big deal. I haven't taken any long walking for almost 6 years. I have never had the energy and the next day my muscles would ache and sometimes I would get nasty headaches with it. My body isn't reacting that like anymore. My family is just not used to me running around like this. I am not used to me being like this. This turn around in my health has given me a new dose of hope that maybe I will reach perfection in my health and become completely healthy. Bring it on! It sounds good to me! I needed that extra dose of hope I was starting to think I would never get over this mountain of chronic illness. I think I will always need to keep an eye on things and I am so used to handfull of pills now that I have no problems taking the supplements that most people should be taking anyways. I think I will keep that up. Now I am learning my new limits which are few and trying to push beyond my old physical limitations without worrying how I will feel the next day. Now I hope this new level of health will last for the long haul.

Wednesday, July 20, 2011

Stuck in Reverse


I ran too quickly,
I fell too far forward,
I assumed the best too soon.

I took too many steps forward
And now its time to take them back.

I wanted you so badly,
I saw you for a moment,
And I started to hope again.

I took too many steps forward
And now its time to take them back.

You are the sand slipping between my fingers,
you are my fleeting memory,
You are my dashed hopes.

I took too many steps forward
And now its time to take them back.

I am left with emptiness,
I am left with a broken soul,
I am left with pieces of me.

I took too many steps forward
And now its time to take them back.

One day I will walk forward,
Pause,
And think of you,
And I will smile knowing one day I will see you again.
The magic is in the trying.

Sunday, July 17, 2011

How do they do It?


When I was first diagnosed with Lyme Disease and sitting on the couch everyday it seemed with a young child running circles around me, I started to ask myself how do other people with severe chronic conditions do it? How do they still live their lives? How do they have a life in the first place? I admire Stephen Hawkings, Michael J. Fox, etc. people who have chronic conditions that will never go away. I liked the title "Incurable Optimist" which is one of Mr. Fox's books. It made me think even more how on earth do you stay optimistic when you are vomiting all day long with a young child and no one to help.
Almost two years ago, I had one of my worst days ever with Lyme Disease. It was spring time when I woke up feeling sick to my stomach. I kept thinking if I just take my pills and eat a little bit. My stomach would settle down. Within an hour I was vomiting and I did not stop for a couple of hours. I ended up vomiting up to 10 times that day. I was shaking from dehydration and doing everything I could to stay out of the emergency room. We didn't need more medical bills. I kept sipping water but nothing helped. I was now throwing up clear liquid by this time. I knew it was time to go to the emergency room when I was on the floor near the toilet and my son came in and saw me crying out of utter frustration. It was time to go whether I liked it or not. My husband called into his job and dropped me off at the hospital and took care of our son. I didn't want my son to see me with needles coming out of me and so ill. I was so pale and exhausted. I thought I was a failure. I should of been able to "suck it up" and keep going without help. I hated the ER anyways. They didn't exactly believe Late Stage Lyme Disease existed. They gave me Zofran for the vomiting and fluids. That was all they could do.
So in reflection of this horrible day, in the life of someone with a chronic illness. How on earth do you stay positive when you are feeling so sick. I don't have any perfect solutions. When I am really sick I try to go with the flow the best I can, get help, rest and find ways to keep my son entertained the best I can. I am much healthier than those days of vomiting and I have a Naturopathic Doctor that can subscribe the Zofran (anti-nausea) medication, my primary doctor could not. So now I keep it on hand and when I get severe migraines and feel that nausea coming I take the Zofran before I start getting to that point of vomiting. I have been able to gain weight and keep it because I am stopping the nausea and vomiting right away. I have been under weight so long that this is a very big deal. It has taken me a year of a Celiac diet to even gain 5 pounds. I didn't think it would take that long. In the end bad days are not fun and I don't believe in belittling the emotions that I feel when they happen except limiting my temper towards my family the best I can. When the good days are around I hold onto them, I try to live in the moment and see the world outside my little bubble. Now that I have more good days than bad its easier to relax and enjoy life. Severe chronic symptoms really test your inner core stealing away your hope, dreams, happiness, and that special inner spark. Its up to us to defend our core. No one else can. Blogging, writing, poetry, photography, smiling at silly things, time with friends and family, cuddling with my cats and son, watching my son be himself always puts a smile on my face. I've had to learn how to ask for what I need instead of acting like I am okay. My husband, God Bless him, always knows when I am trying to just get through. I start to suck down the pain and keep moving forward, problem with that method is it makes me very angry, ugly, and testy. I don't recommend it. Coming up with some last minute plan of some sort does relieve some of my tension. I have learned to keep meds on hand that deal with flares of severe symptoms. And I work with my ND to prevent future system outbursts. Sometimes I think my body is a piece of broken down machinery. I wish there was a quick "body" shop that was nearby that would be nice.
Hang in there my friends, this is a journey and it has bend and twists, bumps, and rises, sunsets, and storms. Holding each others hands as we walk down the road together is the only way we can keep the optimism alive.

Tuesday, June 14, 2011

What Lyme Has Taught Me~ Lesson One

I've just started taking B12 shots again. The pharmacy was kind enough to give me longer and larger gauge needles than what I was using before. So I had to toughen up and just do it. I am a human pin but at least it is giving me some energy to keep up with my life. It does make me wonder how long I've been dealing with this deficiency. I have always felt to some degree that I just don't have the same get up and go like everyone else. I always thought it was a personality thing. I have no idea until my test results come back. This situation does remind me of how I felt when I first realized I was positive for Lyme Disease.
I was so mad that no doctor thought to test me for Lyme Disease or even give it a moments thought. For so long I was told you are faking it. I even had a nurse one time write on my medical records in the office that I was a hypochondriac and looking for attention. I scoped out the notes she left behind when she wasn't looking and my heart sank. The tears started to well up inside of me. I was not making this up! Believe me I had better things to do with my time like raise my son and run a house.
Now I don't give my doctors that much power anymore. I try to do my research before I enter the office, talk with friends that have seen the same doctor or type of doctor, and I usually give a call to my insurance company to make sure what is covered or not.
The best compliment was when I went to see my primary care doctor and asked him what he thought about ruling about some possible genetic illnesses that I might have besides the Lyme Disease that could be complicating my recovery from the Lyme. He was up front with me and suggested the Rheumatologist to rule out Rheumatoid arthritis which I have in my family on both sides. I tried to think of every option including a Cardiologist and Neurologist. He told me they probably wouldn't believe the Late Stage Lyme Disease would be causing my symptoms and I had no evidence so far of family history that would push us in that direction. I appreciated his candor. I realized a very important lesson that day. Go into the regular doctors office with the facts, no heavy feelings, and do your homework before hand. Be your own best advocate. And in the end he told me he wished his other patients new how to advocate for themselves they way I did that day. I felt pretty good leaving his office. I felt empowered.
And yes to answer your question, I did meet with the Rheumatologist and my first words were, "I was diagnosed with Lyme Disease but that's not why I am here. I have Rheumatoid Arthritis in my family and I want to rule that out." Once I made my objectives clear, I had opened up a line of communication that he and I both understood. Also I had a personal reference from a Lyme friend who saw this Doctor and she came to appointment with me to give support and extra knowledge to work with in case he gave me any trouble. I did have elevated Rheumatoid Factor which is common with a Lyme Disease patient but the levels were not high enough to qualify for RA. I was having lots of joint pain and he did examine me for that and said it was tight muscles and tendons that were my problem. So he did prescribe a minimal dose of Tramadol which I did end up using for over a year. Now I don't need it anymore since going gluten free. It took over a year of being gluten, and wheat free before I could benefit from it being out of my system. I'd rather not eat gluten than be on a pain killer for the rest of my life.
I just wish more Lyme Patients could benefit from an Advocate who understood their journey. It breaks my heart that more and more Lyme Patients are ending their lives because they are so overwhelmed. Recovering from this disease is such a long process. It seems to suck the hope and joy right out of you. I just hope one of these days I can be the advocate for another Lyme Patient. Then I can say all of this craziness has come full circle and been a true benefit for someone else. I guess that's why I tell my story and try and listen to my fellow Lymie's. I want to "Pay it forward." If you haven't seen that movie you should. The lesson it shares is ground breaking and simple.

Tuesday, June 7, 2011

Looking for the Pat on the Back


My whole life I have looked for "the pat on the back". I wanted someone to tell me I was doing something right. I needed those words before I believed I was doing something wonderful, spectacular or amazing. I thought I needed someone's approval before moving ahead. The problem with this need, it kept me from moving forward because the whole time I was looking backwards, bumping into my past constantly. I don't know what it is about this Lyme journey, being a parent, or being in my thirties. This need of mine is shrinking, and I am being to realize I never needed anyone's approval. I only needed my own. I know some people call this confidence. I call it growing up. You gotta understand I've been sick for as long as I can remember. Since 8 years old or so I remember getting horrible nerve pain down my legs. I had was in and out of the hospital in my teens from asthma attacks. My health was a part of my feeling like I didn't belong. As an only child and part of a financially struggling family I knew we were different from a lot of families out there. Not all of those difference were bad. I learned from my parents the importance of getting good food from the local farmer, appreciating the hard work to grow a garden, loving people no matter their background or disability, the peace spirituality can bring, and the love of music. So what does this all have to do with looking for "approval" you might ask? I guess it has more to do with relationships than circumstances. I have been looking for one particular persons approval my whole life. I realize now I am not needing that anymore. I have found it within myself and through wonderful friends as I open up my heart. So much has just started to pour out of me. You see when you are so sick all the time you bottle up all the emotions you feel through the day just to survive. You get sick and tired of looking, feeling, and talking about your illness. So you pretend to be "normal" as best you can. Only problem is all the loss and frustration builds up along with any other baggage from your past. Eventually it ALL comes out. I don't think that's in the "how to suffer with illness" handbook. I didn't realize the loss that Lyme Disease can bring, would be compounded by all the loss I have felt throughout my life. And in spurts like these, days like these, after I have wrestled with how I really feel about a particular layer of hurt then I am able to get to a place of letting it go and heal some more. To purge the garbage of my past, and let the current good come in. I am making new memories to replace the old ones. I don't think I will ever get used to this being reborn process. I hate being sick and I hate Lyme Disease. But I am proud of the person it helped me to become. I am a growing photographer, song writer, mother, wife, person. I don't need someone to tell me that. I am moving forward one baby step at a time. And right now I am crying and smiling because I just don't feel like that wallflower little girl anymore. I feel more like a full grown woman inside and out. That makes me want to take more risks and live out my dreams. My body can fall apart all it wants to. But ME, I am gonna live and have fun the best I can. I like this feeling of peace. I hope it stays a while. I needed some of this today. I don't need someone's approval to be myself.

Agony


Agony in silence,
tears in dark places,
pieces of me on the ground,

Paths are twisted
around my feet,
fork in the road.

Lost without vision,
homeless,
shapeless.

Myths are broken,
raw truths
flopping on the ground.

Luke warm promises,
straining
my hands.

Bending the soul,
skeleton framed spirit,
heart still trying to beat.

Agony of body and mind,
escape,
release,
Now!

Tuesday, May 24, 2011

Song Stick Figure


Stick Figure



My soul is battered,
Holding on to strings
of a shredded purse now.

My soul is weathered
Holding on to pieces
of the clouds now.

My soul is tattered,
Holding on to memories
of my life now.

My soul is shattered,
Holding on to tears
of my heart now.

Where’s my reward at the end of the day?

Where’s my rainbow for all the debt I’ve paid?

Where’s my apology for all my disrupted ways?

The emptiness is creeping in,
The emptiness is creeping in,
The emptiness is creeping in,

I’m a stick figure with no inspiration,
I’m a dark shadow in a powder room,
I’m a contradiction in your logic.

The emptiness is creeping in,
The emptiness is creeping in,
The emptiness is creeping in.

Saturday, May 21, 2011

Back then versus Now


At this point in my life I never thought I would start to feel so comfortable with myself. I have been a wall flower long enough I guess. I am starting to get the hang of networking with friends, homeschoolers, Lyme survivors, other bloggers, photographers, etc. I have been talking and meeting with some very cool people. I used to be so insecure and waiting for someone to reject me. Now I go for it and if someone thinks I am weird so be it. Life is way to darn short for me to wait around any more hoping someone wants to connect. I am looking for the connections this time. And it feels pretty good too! I am also writing songs now which I never thought I would be doing. I already write poetry but songs, me?? I have even come up with some melodies that go along with the lyrics. Is this me? I never thought this would be me. The lady who worries she just gonna mess it all up. The perfectionist, worry wort, wall flower, nervous nelly that has been me for way too long. I remember right before I was tested for Lyme and my Naturopathic Doctor, she asked me did I worry all the time. I never thought of myself as a worry wort but I mentioned to her I felt like a walking panic attack. Little did I know then that this was a symptom of Lyme Disease. I was constantly watching my back as I walked down the street, especially with a young child, all the time. I thought someone was going to kill me. I would run scenarios through my head. For example if I took a shower when my son slept (baby at the time) I would triple check the locks first and look again. Then when I got into the shower I would peak around the curtain to check and see again if anyone was there. Of course no one was, that was me all the time with a little baby by myself. Not a good situation at all. When my Naturopathic doctor heard I had the paranoia I realized something was really wrong. Hearing out loud that I had the symptom of paranoia worried me. My grandmother was mentally ill. I was super concerned I was too for the longest time. To think a bacteria could case such mental torture really surprised me. It never crossed my mind before that LYME DISEASE was the answer to my problem. I think this particular symptom fueled my already insecure and riddled self esteem which for as long as I could remember was always super low. I hated myself mostly. I also wonder and convinced the depression was Lyme related as well. It wouldn't surprise me at all. I guess that's why I mention this backstory to give the contrast of then and now. In the first few months of treatment with antibiotics I couldn't believe the difference in the way my mind was working. My worry, anxiety, and depression came down a few notches. I stopped watching Ghost Hunters. I was convinced we had ghosts in our house I was so paranoid before treatment. I thank God that those type of extreme symptoms are gone for now. And when the paranoia creeps back in I know that its time to talk to my Lyme Doc right away. I don't mess around with that symptom any more. I still have depression mostly with some anxiety. I think its more from living in Maine with nine months of yucky weather and the stress of trying to stay in treatment but keep our finances somewhat balanced without getting more in debt. It was around this time three years ago that I was diagnosed with Lyme Disease by blood test and over fifty symptoms. It felt amazing to be believed in finally.

Thursday, May 19, 2011

It blows my mind....


It really does blow my mind how much one persons body can go through yet the human spirit lives on despite it all. I marvel at our ability to live everyday, to find the good pieces and hold them tightly. People have told me I am strong. I rarely ever feel strong. I guess weakness is the new strong after all. I think its more like vulnerability that is seen as strength. And it is! I am amazed at how our society watches people suffer to see what they will do. Its human nature I think. I think we all wonder the special ingredients it takes to overcome insurmountable odds. So what are they? When I have that figured out I plan to let everyone know! I am still learning what that is for me in this life with my own set of circumstances and state of health day to day. If I have learned anything after three years of treatment is simply this to never loose heart, be truthful with the pain you are going through the right person will listen eventually, and don't loose your humor. I am sure there are more magic ingredients to be found. Some days I am shocked I made it through out totally loosing my mind. Music, photograpy, my sons laughter and my husbands hugs also get me through the tougher days. I start to crack when my core relationships become stressed, my health goes down, financial woes come back to the surface and life just seems uncertain. Poor health on top of this crazy life at times just seems too much to bear some days. I am amazed that when I come out of those times, how I am able to look back, learn, accept, see the truth of this tough life and realize how lucky we are to have each other. Lyme certainly reminds you of what is truly important. I should try and sleep lets see how that goes :) Sweet dreams

Tuesday, May 17, 2011

The loss I feel


The loss I feel everyday,
chips away at my faith,
my hope,
my wear with all.

The loss I feel everyday,
reminds me to fight,
hold on,
and don't let go.

The loss I feel everyday,
can control my heart and soul,
crushing me,
silencing any spark of happiness in me.

The loss I feel everyday,
makes me stronger,
to fight for my friends,
and protect those I love.

The loss I feel everyday,
rips me to the core,
steals my dreams,
and gives me nothing but heartache.

The loss I feel everyday,
makes me a better advocate,
mother,
and wife.
Because it reminds me, my life is a fight, worth winning.

Tuesday, April 19, 2011

The Season of Waiting


I laugh everytime I hear the saying "hurry up to wait". Lyme disease is such a strange disease. One week you do okay, the next can be pretty good and the next you are sitting on the couch. This happens even with a steady regimine of medicine, vitamins, and other supportive therapies. You can try so hard to get back to "normal" and end up gaining very little. Yet in the midst of this internal battle, life goes on with or without you. This push and pull is where I think I find the most frustration. I call it a good when I can be physically active for a few hours and be in pain the next day. You would think by now I would have given up. 3 steps forward and 4 steps back. On and off antibiotics. I hope this is just a season of waiting for a better quality of life. I hold on to this thought. That this too shall pass into the next season of soaring. Its in the valleys that we develope the wings to fly.

Tuesday, April 5, 2011

Moving Forward


I have been off the antibiotics now for a few months. Other than the fatigue, things seem to be doing okay. The twitches have come off and on. They make me wonder how much permanent damage may already be done. Also keep wondering if it can be fixed. Hubby's been working lots of hours, I've been up and down in my health and my sons social and emotional problems all seemed to get intense this past few weeks. I am glad that the stress level has been brought back down again. And we all have had some good talks with each other too. Now we need to consider what school is best for my son this coming fall. Still doing research but making progress slowly. Its been hard trying to get together with friends. So glad this week is filling up nicely with some alone and adult time for me. I needed to put myself back into my schedual. Now if we can get some family fun time and a date we would be golden. And some more warm temps and sunshine would be nice too!

Tuesday, March 15, 2011

Closed


I placed myself in an empty shell,
I handcuffed my shadow with the ghost of life gone past,
I slipped my heart into a jar.
And traded my soul for a plastic face.

A tragic sculpture of compromise,
The truth is sucked from my veins,
Replaced with dusty reapproach.

So let me slip away into the museum of life,
Let me be your tragic love story.
Poisoned by lies,
And overcome by impulse.

Leave me in my agony,
This statue has nothing left to give but a fake look of contentment
And an empty smile.

Look into my eyes,
See the light fade,
I have lost my vulnerability.

Sunday, February 20, 2011

The Trenches

I started a new protocol a month ago and this had been going well without the antibiotics.  I tried to stop some of my adrenal homeopathics and in the end I am flat on my butt as usual all over again.  The hands and feet on fire and burning along with my throat.  My heart racing when I go up the stairs.  My eyes are burning up.  I always get sucked into the thought that this battle will be over one day.  And I will be better and get to live a normal life.  Talk about fantasy land!  I have to go back on antibiotics for a while and I will need to buy more adrenal herbs.  More money out the window.  In the meantime my wonderful 5 year old is driving me crazy with his favorite new trick potty talk.  I am worn out, tired and lonely from all of this.  I am trying to keep my cool.  Its not that easy some days.  I know its a normal kid stage but add a sick mom to the mix and it gets crazy!  I am trying to rest so we can get out a little tonight.  I think my son and I are both feeling the isolation.

Friday, February 11, 2011

During the Winter of Lyme




May will mark three years since my diagnosis with Lyme disease.  I am still trying to get in and see a Lyme aware dentist.  I need a cleaning and cavities filled.  I am taking lots of vitamins and minerals on the KPU protocol.  It seems to be helping slowly.  The acne on my face is starting to clean and the pain is starting to lower.  If anything I am so tired by supper time and I need some down time every few days.  I am proud of myself to have made it this far.  I have taken several big steps towards recovery.  I just hope I can continue this upward trend.  I feel closer to my family and friends and I have learned some key lessons.  I doubt the learning will end anytime soon.  I can keep up with the housework for once, sortof, and stop to enjoy the little moments with my son.  I have some many ideas, dreams and goals.  Maybe they have a chance to come true after all.