Saturday, August 29, 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, acne, migraines, etc. as long as I don't have to go back to antibiotics again and don't have to have one of those PICC lines, I'll be all set. So here I am facing the very thing I really don't want to do. Not sure what will happen until next week when my test results come back. My hair is starting to fall out again more than usual and the pain is getting worse. I know its time to take a harder medication. But I really don't want to. I think that's why I keep going back to Jesus in the garden. I think he had to face a harsher reality than mine but the struggle to make peace with situations that are hard are still the same. It becomes a question of "will's". I want God's will for my life but thinking that hard medications, MRI's, and tubes coming out of me would be part of that plan seems a tad bit crazy to me. I wish I could see the bigger plan. I have learned that holding on through a situation takes and makes a person's character than running away. The disciples ran away but Jesus faced the task at hand. I can't imagine facing death alone. I do have some great friends and family in my life supporting me. But you feel very alone when you realize you are the one going to the pharmacy and you alone have to take the drugs and you alone have to the deal with the side affects and pain. I wish there was a way out of this Lyme; a miracle healing, rapture, a new body would be nice. Then I think of friends who have died of cancer, diagnosed with it, or currently fighting. Then I can see some purpose in fighting Lyme. I know I am not alone in that fight. I have too many friends who have it. Its just another loss I have to face. I am not excited about that prospect. Sometimes I feel upset and think this whole thing is unfair and I get angry. Then I realize there are people sicker than me. Maybe if I just hold on, I can help someone else do the same. Then at least this whole crazy process would have purpose. My biggest concern is the impact this will have on my family, my body, my friends, and my abilities to get out the door and take care of the house. I am off the easy road and onto the hard road again. This isn't fair! I just hope I can get to the place where God's will rules and I can set mine aside for his. Only he knows where all of this is going. A place of surrender is a hard spot to get to. Wrestling emotionally just takes a lot out of you. I feel like I have to grieve a loss all over again. I am not looking forward to it. I just started to get my life back, more energy, less pain and now I feel like I am loosing that all over again. I think that's the bottom line. And its just not fair. Dear God, help to surrender to your plans and will. Amen.

Sunday, August 23, 2009

“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. Everytime I say it like it is, I feel freer, alive, honest, real, human, normal, etc. I am messed up and so is everyone else! LOL Why did we stop putting ourselves out there? Maybe its because I need to put myself out there before someone else can have enough courage to do the same. "Be the change you want to see" as the quote goes. I need to find my courage again and tell my truth.

Thursday, August 13, 2009

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

Tuesday, August 4, 2009

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 with Lyme disease and not have to explain why I am missing spelling words, jumbling my sentences, and not making complete sense. On days like these when the herxing makes my daily symptoms worse I start to loose hope that I will ever get better. My mind starts to wonder off into worse case scenarios and what if's. Will I ever get better really? Does that even exist for me? I wish healthy people could see the true pain that I carry around every day. At the same time I understand no one can fix me. Some open ears would be nice to find. I could use an extra portion of hope, faith, vision, energy etc. today. I think I deserve a break from being sick. I think I've learned my lessons and now its time to move on. I know this is not going to happen. In some form or fashion I will always live with this disease until the day I die. Then my son comes into the room asking for my help and I realize I just don't have time to feel sorry for myself today. I have more important things to do like raising my son. I guess its giving myself permission to have a time to let it all go. This blog is my place to just let it all out and purge the dark feelings out and away from me. Today I just wish I was healthy.

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 drunk, smoke a cigarette, smoked anything else, or done anything else illegal.
12. I was almost arrested one time with an insurance mix up with my car and the registration was flagged and it was considered illegal to drive that vehicle. I was given a pass to drive to work and back home only. At work I told my co-workers that I had quite the morning almost being arrested on my way in.
13. When I was a senior in high school my mom and I went to inner city NY and on the subway between Manhattan and Brooklynn trouble makers shot at the subway car I was in. The window the bullet hit was across from me. I fell down and fainted. I just remember waking up and everyone yelling "get down". Glass flew but no one was hurt.
14. I have hiked up Mt. Katadin with my parents two times.
15. I have always wanted Suz's personality, Darrah's intellect, Sarah's Passion, Jonathan's Loyalty, Laura's mind for science and math, Ben's gentleness, my mother's artistic talent, my father's musical talent.
16. I love watching award shows for music, acting, dance, etc.
17. I like old and new war movies and old and new western's.
18. Since the first day I saw my husband, I thought he was hot stuff and I still think he is :)
19. I feel bad when I see parents yelling at their kids in the stores.
20. I hate it when people go in the passing lane on the turnpike and decide to go under the speed limit and I can't go around them.
21. I can't stand having my picture taken even now, only three pictures I like of myself; my little facebook icon picture with me and my camera, my wedding day, and the day my son was born.
22. I am not a big fan of the complete dark or high heights.
23. I have always been interested in forensics.
24. I memorize license plates to keep my mind busy while I'm driving.
25. I have been on the news once and in the newspaper I think five times.

Monday, August 3, 2009

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, socially I really had no clue how to make friends, my acne and skin still had weird rashes and wouldn't go away no matter what I tried, nerve pain down my legs from my lower back for as long as I could remember somehow became worse and I couldn't wear high heals because it made this symptom worse and that is still true today, my scalp was full of dandruff and scales and no matter what shampoo or medication I was given it never seemed to solve this problem to this day, PMS was off the charts painful and now all over the counter pain medications or perscribed I have a tolerance to and I just deal with it, even homeopathic pain relievers do not work so far; only treatment of my Lyme seems to make the pain dull out slowly, my lips and eyes started to twitch more and more, intense ringing in my ears, I would see things out of the corner of my eye that were not there, I still hear sounds that are not happening, herpes simplex outbreaks on and in my mouth starting happening more and more and getting worse each time, never truly feeling rested after a full nights sleep, hot flashes for no reason and I still have those, NO energy then and now; B12 shots help some, etc. I could keep going. It was my ND who suggested I fill out a symptom chart and I was not convinced to get tested until I did fill the chart out and realized I had over 50 symptoms at some point in the last 18 years. I was scared and worried. When the test came back positive for Lyme, I went into angry mode. I was angry at being misdiagnosed for so long, the price tag for the Lyme medications, the financial stress I was feeling, family members who kept telling me to just get it together and clean my house, church members telling me I was too needy and feeling sorry for myself and to get over it, family members who didn't support me before my diagnosis but suddenly supported me know that I had a name for my list of problems, and worried I would never get better again. No one tells you that you will grieve your loss of health and all that entails over and over again. I feel like I am in a cycle that plays out daily of hating this, to being okay with it, to anger, frustration, seeing the beauty in the pain, finding ways to cope,etc. I feel like I have felt every emotion possible and some days it feels like I go through so many emotions I can't keep up. My biggest concerns is for the impact on my family and especially my young son who I take care of full time. I worry he could get this too. I was active when I was pregnant and so far he is healthy. This journey has taught me a lot. I just hope this healing process doesn't take a life time to figure out but either way I intend on educating people along the way and bring as many great friends as possible.

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, live, and find specks of hope to hold onto. I think my hope now lies not in what I cannot do because that list sometimes seems really long. My hope is in realizing that this body of pain is not permanent, my ears works most of the time and I can listen to my friends and family, and I have a voice that works to educate others around me about Chronic Lyme Disease. So "I will rise on eagles wings"(from the Chris Tomlin song) not because of my own strength but because I think God has already given me all I need to do my best. A heart that is open and willing to give some comfort when I can, ears that hear other hurt and eyes that see the pain around me. I don't need a perfect body to do what I've been made for, to be an Angel to others. Proverbs says that a man without vision dies. And honestly I think Solomon was right. I understand my calling now. Knowing that gives me a dream and Lyme cannot take away my dreams. I HOPE that as times goes on and we get to know one another that we will take time to listen to one another's heartbreak, give support as much as we can, and realize that together we can get through this. Because there is no way I can do this alone. Instead lets just get through the everyday together. It makes it more bearable that way :) This is the place I come to, to realize I am not alone and I am not the only one. And I hope that this can be the same story for all of us. (((((((HUGS))))))) Angele

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 be completely normal again,

Will you see me when I roll up my pant leg and stab myself once again with a needle and give myself an intermuscular injection of B12 and then put the needle in my personal sharps container,

Will you see the pain in my eyes, hear the heart ache of my soul, and understand my loss and disappointment,

I was just wondering when will you see me, not Lyme, depression, anger, loss, sickness, rashes, weakness, fatigue, vertigo, tinnitus, depletion, memory loss,

When will you see the real me, the one inside the broken down body

The person who wants to be normal, dance, sing, run, play, jump, eat anything, sleeps deeply,

When will you see me?

By Angele Rice

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 isn't easy but its a one day at a time type of situation. Also its the recognition that there is a choice between becoming jaded and being matured by the situation. I think maturity comes from the patiently holding on and learning something from the experience that changes your whole out look on life in general. I think this is the hardest of all lessons to learn. Some sufferings have to be walked through and can't be avoided.

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 of it.

8. There will always be people who understand and help me through my illness and those who just don't have the ability to do so. I have to accept that.

9. There is no magic pill. Only layers that can be peeled off over time through hard work.

10. Taking pills, seeds, muscular shots, heat packs, hot baths, are need to keep me healthy and everyone needs some type of health regimine whether they are sick or not to be healthy and keep it that way. Its all about self discipline and self control. Everyone has to learn this lesson even me. But I'm not alone.

11. Humility is the key to every situation I find myself in. Anger gets me nowhere.

12. I have good days and bad days. I am grateful for the good ones and I try to accept the help offered on the bad ones.

13. I had to get sick to value my health.