Showing posts from August, 2009

Anything but that

Luke 22:39-46 Jesus went out as usual to the Mount of Olives, and his disciples followed him. 40 On reaching the place, he said to them, “Pray that you will not fall into temptation.” 41 He withdrew about a stone’s throw beyond them, knelt down and prayed, 42 “Father, if you are willing, take this cup from me; yet not my will, but yours be done.” 43 An angel from heaven appeared to him and strengthened him. 44 And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground. 45 When he rose from prayer and went back to the disciples, he found them asleep, exhausted from sorrow.

I think my saying with the whole Lyme thing is, "Anything but that." Now as I face facts, my current Lyme treatments are not enough and again I need to go on antibiotics. They kill my stomach and so I am faced with the idea now of a PICC line or a port-a-cath to by-pass my stomach. I have always said to myself I can handle the pain, the herxing, the sweats,…
“It takes more courage to reveal insecurities than to hide them, more strength to relate to people than to dominate them, more 'manhood' to abide by thought-out principles rather than blind reflex. Toughness is in the soul and spirit, not in muscles and an immature mind.” Alex Karras

I always thought vulnerbility was a weakness of mine. It seemed to make other people feel uncomfortable until I met a group of friends that encouraged me to keep going. I miss sharing deeply from the soul. No one seems to do that anymore. Its like a lost art. We seem to keep our short comings, failings, skinned knees, and darkness locked up in some closet somewhere. While we get to look great on the outside we are drowning on the inside. I don't understand the idea of stuffing it, pushing it down, DENIAL. Courage is always found in Truth. The Truth is never pretty sometimes its really embarrassing, painful, ugly, but it can set you free. That's the power that the Truth can hold. …

A letter to a Misguided Father

Please don't think, I am okay without you,
I still need you in my life,
Please don't think, I am mad at you,
I am frustrated by your actions,
Please don't think, I will ask for less,
Your grandson is not getting younger
Please don't think, I excuse your absence
By not being here your loss is felt
Please don't think, your choices don't have impact
They do
Please don't think, inaction is the best choice
You loose precious memories
Please don't think, I am not hurt
I feel cut to the core
Please don't think, just listen
to the pain your causing
Trying to keep hope alive is sometimes the hardest job any sick person can have. I feel the constant need to prove to others and myself that the really do work and I am getting better. Problem is I do well for a few weeks maybe even a month and then I feel worse again. I can live with the acne, painful joints, and dark circles underneath my eyes but I cannot stand the full body muscles twitches. Its a visible symptom that most people can see. My body jerks around like someone with tourettes syndrome. I can feel the build up of energy inside my body right before my arms, legs, and/or head move in unpredictable directions. I feel so embarrassed. I hope that no one realizes what is happening to me. At the same time, conflicting as it may seem I wish someone did see what was happening and having an understanding heart about the whole situation. The only group of people who truly get what I am talking about are others with the same disease. It is a relief to talk to someone else…

25 Random Things About Me

1. I have always wanted to race a car at Indie 500 and let it rip.
2. I tend to come up with random tunes for songs, lyrics, or choreograph dance pieces in my mind and then totally forget what on earth I just came up with.
3. I like the feeling of my bare feet on any surface in just about all seasons except bare foot in the snow, that's not happening.
4. I wish I had a sibling to grow up with and I have always wondered what that would be like.
5. Photography is my escape from reality. I can tune everything out and just focus on the shot I want.
6. The wheels of my mind are constantly turning and I rarely get a break from it. Cooking and photography quiet my busy mind.
7. I have always wanted to meet the Queen of England, do a formal curtsey and have a tea and chat.
8. I want to travel Europe someday.
9. I want to leave my mark on this world before I leave but I have no clue what that is yet.
10. I have never been a bride's maid in anyone's wedding.
11. I have never been d…

My Lyme Story

I was bit by a tick at the age of 12 years old and I have a distinct memory of the bullseye on my upper right leg. I remember wondering if a tick bit me or a spider. Either I was bit by a tick from Maine or Long Island, NY. Around the same time this all happened I lived a short less than a years time in NY and then moved back to my official state of Maine where I have lived my whole life except that short NY stay. When we moved back I didn't think about that bullseye again until 18 years later. During those 18 years I had several years with bad teen asthma, allergies, hospital emergency stays, severe girl problems, and it wasn't until I was put a little drug called Lupron that my Lyme really hit high gear. After one year on this drug I was totally wrecked. I had been on several other hormonal drugs but this one really pushed my body over the edge. My paranoia kicked into high gear, high anxiety with severe bouts of depression to the point of thinking of ways to kill myself, so…

Finding Hope

Every time I have a bad day with Lyme I start to wonder will I ever get better? Will I ever be the same again? Ever since I started the Lyme Loft I try to take time and read peoples personal stories and I as I chat with people I again have to say, will any of us ever get better? When will it end? Is there any "hope"? The song that I have listened to about a million times is the Chris Tomlin song "I will rise" which is posted on our main page. Its my favorite lately because I feel like my "flesh" fails everyday. Trying to keep up with a three year old boy, house, family, etc. is overwhelming sometimes. I start to wonder can I do all this? My answer to myself is usually NO! But the more I read and the more I hear what all of you have to say and the more I listen to this song I find the energy to keep moving forward. Not because of pity but because I see that we all have "BAD" days, weeks, months, years! Somehow we find a way to talk to one another…

When will you see me?

When Will You See Me?
Will you see me when I enter a store and I am unable to navigate the aisles because they keep moving back and forth,

Will you see me when you stare at the rash on my face and keep asking "how are you feeling" "you poor thing",

Will you see me when I tell you I feel like giving up and talk about the end of my world,

Will you see me when I am struggling to clean my house and my hands are shaking and my legs are locking,

Will you see me when I am forgetting my fleeting thoughts, slurring my speech, and using the wrong tense verbs,

Will you see me when my eye is twitching, my lips in numb and stuck in place, and my legs kick the dashboard of the car for no reason,

Will you see me when I take my drugs eight times a day and ask am I drinking the recommended amount of water,

Will you see me when I say I want more kids the doctors keep telling me I need to wait until I am better,

Will you see me when I am alone in the dark crying and wishing I could b…

The Letting Go

Fallen life all around me,
Not a sound in sight.
devastation, loss, collapse.
Suffering in the wide open,
vast, overwhelming, silence.
Loss for words,
tears coming,
lips trembling,
hands shaking.
Empty screams,
Hoping the present is just a nightmare.
Until one day the answer is "Lyme".
Recognition, believing, seeing,
Validation to self.
This is really happening.
Then I say to self, "Let it Go."
The letting go is harder,
Than the holding on.
Acceptance is more painful
Than moving forward.
This is really happening.
Anyone can move,
Not everyone can swallow the bitter pill of pain and suffering
And keep moving forward no matter the outcome.
So I guess that makes all of us,

I see my journey with Lyme as a constant battle that one day I might win and the next day its defeat. Some days I feel sorry for myself, get angry that I drop things and make messes, and some days I actually feel somewhat normal. I think the "letting go" is the realization that this i…

How Lyme has changed me for the better

1. A relationship with God means walking with him along the same path, not walking towards or away. Psalm 23

2. I am complete the way I am right now today. Mess and all. Nothing needs to be added or taken away. No altering needs to be done.

3. Lyme is my teacher and not my enemy. It teaches me the depth of pain that other go through. Compassion, empathy, sympathy. It moves me to get into activism for others. To yell loudly for those who can't.

4. My purpose in life is beyond sickness, roles, what others say, Its to help others with what I've been given.

5. Acceptance of Lyme doesn't not mean I love it. It just means I understand its a part of my life and I'm still going to live it. It does mean I will cry, scream, yell, get angry, depressed but I will work through this by being open, honest and real.

6. My son will be a more compassionate person because of my Lyme. It will not hurt him as long as don't let it hurt me.

7. I have a life and Lyme is a part of it and not all…