Saturday, December 11, 2010
I thought the word "fall" that I've been hearing from God is meant "fall" down, let go, surrender. Those things are good but fighting Lyme disease makes me falsely think I am constantly fighting alone and I can't stop fighting or I loose group. So those definitions never sat well with me. When I listened to the reasoning that the Hebrew word for Trust meant to run to, the first thing that came to mind is what soldiers do in battle, "FALL-BACK!" fall back to somewhere safe. So maybe all this time God hasn't been telling me to stop fighting or give up, but to "FALL-BACK!" into his strong tower. It reminds of the new Cutless song "my strong tower, my shelter over, you are all I see." When I think of God as a place to run to, I trust him even more. I feel like I am starting to understand what he was saying in the first place. I can do that, run to my place of safety. I have few place that are "safe" any more. I recently had a dentist tell me he wanted me to see another dentist because he didn't want to perform my cleaning then have me go home in pain and then not be able to help me. So he sent me packing. I was disappointed because he wasn't willing to learn. I did find a dentist who will help me but they are one hour and 1/2 away. Welcome to Lyme Disease, I am so sick of the controversy that surrounds it. In the middle of the this crazy internal battle, I do need a safe place. I am so tired of fighting this Lyme, some days it really wears me down to the point of almost feeling numb. I am ready for a break. I tease constantly that I am going to the funny farm to get away from it all. Maybe I should be running to God a lot more for that safety and rest.
Psalm 62: 5 Yes, my soul, find rest in God;
my hope comes from him.
6 Truly he is my rock and my salvation;
he is my fortress, I will not be shaken.
7 My salvation and my honor depend on God[c];
he is my mighty rock, my refuge.
8 Trust in him at all times, you people;
pour out your hearts to him,
for God is our refuge.
Wednesday, December 1, 2010
My Perfect man accepts my ways,
Like the secrets on a page,
Looks me up and down,
Twists me all around.
My Perfect man sees right into my eyes,
The way my soul is beautifully wise,
Holds me close,
And breathes me in deeply.
My Perfect man slipped today,
My Perfect man fell off his throne.
What am I to do?
He's just a man.
Who falls all around me.
I tried to prop him up,
I tried to adjust his pose,
I tried to even change his clothes.
My Perfect man just sat on the floor,
Unmoved, unchanged, underwhelming,
What was I to do?
My Perfect man was not a super hero any longer,
Just a man,
With a good heart.
My Perfect man was just a shadow,
Of the real man I was looking for.
Monday, November 29, 2010
I tried to come off my antibiotics and I managed to go for about 5 days until the co-infections started to really ramp up again. My system is still so up and down. This sea-saw life is really starting to get to me. I really wish I could take a vacation from it but unfortunately it follows me. I do great for about two weeks, yeay! Then crash, crash, crash, all over again, the sweats, runs, nausea, feeling like my hands and feet will burn right off my body...etc. Not to mention the feeling of anger, isolation, fear, anxiety, depression, and pure madness. I'm surprised no one has checked me in to the psych ward. I just don't understand it anymore. This messy thing called Lyme Disease. I understand that in this life I may not know the "reason" for all this suffering. I understand it on an intellectual level and the rest of me is just ticked off. I do want answers! I keep coming back to the same conclusion and the same stinking question, I don't know but I want to know now! Why? Why? Why? I get I need to hold on, long-suffering; to put up with, I've been doing lots of that these days. But for how long? When will I be relieved? Where is the help? Where is the break? I want an "out" and I am never given one. I still have to keep walking over hot coals. Don't get me wrong, life has its beauty in people, animals, sunsets, and the smile after helping a friend. I just hate the struggle. I know that butterflies have to struggle to strengthen their wings. I have a hard time believing all of this torture will make me a better person or strengthen me in some way. I feel like jello without a mold, wiggling all about with no grounding force around me. And I am about to scream. At the same time, which I don't know how this happens, goods things come across my path and I am happy for a moment or so and life isn't so bad. How on earth can all those same feelings be inside me raging about, mixing, all at the same time? How is that even possible inside one body? But I tell you that is what its like to be me. One minute up and the next down. Life the up and down affect.
Tuesday, November 23, 2010
My computer is finally fixed thank goodness. I was starting to go crazy not being able to work on certain sites and my photography. I am surprised looking back at all of my photos from the past two years how much I have grown as a photographer. Its the one area I actually have some confidence in. I came off my antibiotics and of course other Lyme symptoms are now acting up. The knee pain, fatigue at night especially around 6pm, my skin is getting better though, and my stomach and vomiting is over with. I just think 9 full months of this abx was enough. Not sure what I will be taking in the future. I just want some sort of balance. If the other symptoms get worse I will need to go back on some sort of abx but I'd rather not if I can avoid it. I just hate the burning hands and feet. It feels like I touched a hot stove and you can't get away from the feeling. I have been sweating through shirts and super emotional too. I can't wait for some of that to go away. Right now I am trying to find ways to earn some money part time online if I can. It would help us out. Not sure what my next protocol will be and switches usually are expensive at first. Especially if I end up on Zhang for the co-infections. I think that will be the next step. I still take all my other meds and I do okay during the early afternoon but the night and mornings take a while to get through. I feel like an inch worm during those times of day. I am surprised at how much christmas shopping and decorating I've gotten done despite how I feel. I just need some more direction in my life and new goals and dreams for 2011. A little fun couldn't hurt either. This rain and lack of sun doesn't help either. It makes for a depressing entire day. I have been trying to get out with my son and not stay at home all day. I have found some great homeschooling families in the area and even though our schedual and life circumstances are crazy, people don't mind at all. The other moms are willing to get together when ever we are able. That's been a big help. Hoping to get together after the holidays. Not sure if I will homeschool next year because when I'm sick we don't get as much school work done but it has helped my son grow in certain areas where he was behind. Which is super cool! I have no clue where this crazy life will take me but I want to get a support group going in my area by the end of 2011 and maybe get my story in the newspaper around here. Not sure yet how I feel about that. I just get sad when my mom or husband tell me of another person with embedded ticks and given NO treatment. So sick and tired of hearing this! Time to get moving!
The day has torn my flesh away,
my body rots to the bone,
my heart is ripped,
I am black and blue.
My eyes are plucked from my head,
my mind is alleviated of memory,
my soul is ravaged,
I am black and blue.
You keep asking me if what I am going through is real,
Live my proof,
I am black and blue.
You keep starring, as if I am faking this pain,
Walk in my shoes,
I am black and blue.
In all sincerity, I don't give a s--t what you say, my bruises tell the story,
I am black and blue.
Still working on this song. Its graphic and so is Lyme Disease. Any feedback would be great.
Monday, October 18, 2010
These days I find myself asking the question, "where am I" ? At 32 I thought my life would of been so different than it really is. I was suppose to have the career, two kids, perfect health, plenty of funds for family vacations, etc. Talk about a dream world. Too bad life couldn't mimic the movies. My health doesn't exist, just a few weeks of good then stuck in the big chair, money is okay but we never seem to get ahead because something always comes up like the car, computer breaking down, vet bills, need I say more. Why does life have to be such a battle for some people and not for others. So not fair. I don't think the way my life turned out is horrible. I have a good hubby and son and two furry children. I am not sure how I went from a day dreaming 20 something to a jaded 32 who laughs in sarcasm when the computer dies. Maybe I just woke up to the reality that life is tough no matter who you are. So why Lyme Disease on top of all of this? Isn't my life nutty enough as it is?! So where am I?
Tuesday, September 21, 2010
Why is it when things get tough we just decide to runaway. Whether its depression, chocolate, blasting some hard rock, music, photography or just day dreaming of a day without stress or problems. It doesn't solve a stinkin' thing but I still do it from time to time. I forget how many balls I'm really juggling. I need ME time too even though it seems I get lots of it in bed sleeping or sitting in a chair watching movies. Just for the record that doesn't fill the ME time requirement. I so need to go to a concert and sing until my vocal cords fall off, see a girl movie with a good friend, or just go by myself and take some fun photo shots all alone. I torture myself by taking care of everyone else. I am such a good mom and wife and I run myself into the ground before I get some ME time. Maybe I should learn from my mistakes and get over it already and get some much needed therapy. Chocolate is not enough anymore. I should runaway with myself and find MYSELF! I need some new direction, dreams, ambition, etc. I need to fill up again. I just feel so empty. I have lots that I want to do at the same time and no courage to get it done. Such a weird feeling. I don't like being in the gray area. Half healthy, half sick. Limbo! I wish it could just go in one direction or the other already. This girl needs to have some fun! I want one of those laughs where you don't admit you almost peed your pants. :) I want to really smile, not the fake ones for photographs. I want to enjoy the life I've been given even though it seems like a crazy mess, its not half bad. I don't want to be a pedestrian. I want to be on a bike riding into the sunset. I haven't been on one since forever ago. I miss the feeling. I want to help produce music, play with charcoals on an open canvas, go sailing, sing in front of people and actually sound good, join a rock band, travel the world, etc. Lots to do and a body that gets in the way. I get in my own way. Maybe I need to stop running away and just start being brave in my own life. I like that idea better.
Sunday, September 19, 2010
I really wanted to get out and enjoy the day with my son and husband. I am so sick of being sick! F--K Lyme! I take 30 pills a day. You would think something would work by now. I need something to work towards. I need a new goal. Maybe I need to focus on getting a viewing of UOS in our area soon. Maybe this fall at the Frontire. What I hate about this disease the most is that it wears down your soul. I want to fight but some days I just want to cry and feel sorry for myself. I guess today is that day. I wish I could just move beyond my broken heart in a hurry and just walk out that door and make pretend I'm not sick and just enjoy life. Its just not that easy any more. I feel like I watch the world pass me by mean while time keeps ticking and I just become older. My life has to count for something more than just Lyme Disease. I will fight it and I plan to kick its a--. But this journey is exhausting and heart wrenching. No one should have to go through this daily torture. Its inhumane. There has to be more to this life than this crumbling body. My body is failing body traps my soul and I have to find a way to get out of it. To surpass it. To over come Lyme. Where will my story end? Or is it suppose to? I've always thought that God can use the dark to help bring light to others. I do think he uses my experiences to shed light on the pain of others. I just wish I could see that plan more clearly today. I wish this train wreck made more sense. Right now it just sucks! I just want a break and I'm not getting it. How do I keep going like this? Some days I just don't know how I even get through the day. Its got to be by the grace of God. By the skin of my teeth. Holding on by the tips of my fingers. A while back I thought if I went to the newspapers to share my story I could change the world. Right now I just want to get through this crappy day and start anew tomorrow. I was promised a better life than this. We all were. Where did it go? It just isn't fair. I have a beautiful son who deserves a healthy mother. I deserve to start a photography business and enjoy my life. I deserve more. I even deserve to have fun. To have a life that doesn't sit on the edge all the time. The edge of a cliff. I feel like I stare into the darkness too often. I need to see some fireworks to pierce the night and bring wonder back into my life. To be moved by bits of stringy light. Or maybe its the fact we are all together watching the fireworks, a community that makes each member stronger simply by being together. I think I need both today.
Tuesday, September 7, 2010
I wasn't expecting Lyme Disease to help me heal from the other hurts in my life. I am amazed at how much I've grown and let go of. I think sitting in a chair day after day has allowed me time to think about certain areas of my life and do the necessary work to get past certain pieces of pain. No one tells you that chronic illness brings out the old hurts. But just like Lyme Disease each time I get through one layer of pain and new one needs to be walked through, endured, and made peace with. Realizing that "it has nothing to do with me" and "falling" are the two pieces that God has given me to know how to deal with this crazy life I've been given. I thought people treated me badly either because I deserved it and did something wrong or I just wasn't a person that people wanted to get to know. I don't carry that burden with me any longer. I feel a lot freer because of that. Learning to not be a super woman and just be myself and take my time is a harder concept. I always want to go above and beyond for my family. Especially my son, I see other moms doing so many cool things with their kids. I feel bad when we only watch a movie and some how crawl through the day together. I am amazed how tolerate and flexible my son is. He makes me smile and he gives me a reason to keep fighting and moving forward. My husband makes me laugh at this crazy disease. He's so funny sometimes. He know even knows my limits. When I want to push past them a little too far and probably make myself sicker, he reminds me to not over do it. I appreciate that. I have some good close friends now and a best girl friend too. Gotta have a girl friend to talk too, I love my guys but I need some estrogen once in a while too! I am so glad I have Beth in my life. I can talk about anything. But I always find myself talking about marriage, my son, life, dreams, everything, including lots of laughing! Also my online Lyme community has grown and I feel blessed to have so many Lyme friends that I can talk to day or night when I feel the blues coming, good day or bad, or questions, I am never alone. I never thought this would be my life. I am glad I still have dreams to pursue. They keep me moving forwards. I really want to get involved in the local Lyme Disease groups, especially in education and advocacy. I worry about the air hunger is the Babesia back, will the Bartonella ever go away, how do I get off antibiotics without ending up in the ER again. As things start to get better, I worry the rug is about to be pulled out from under me. I pray the progress continues. My body is telling me its time to go to bed. I need to see my Lyme doc tomorrow and make some decisions. I will feel better when I have a plan in place.
Friday, August 13, 2010
Off and on for years I've had people tell me I wasn't really "that sick", looking for attention, or I was just making it all up. Things weren't that bad. This is the biggest myth of them all. I am not looking for your pity. Pity hasn't cured me of Lyme Disease. Somedays I wish it would. BUT it doesn't, so why would I look for something that doesn't help me get better or get through the day. I understand we all have problems, and we have a tough economy. Please don't belittle my reality and I'll do the same for you. Can you tell I've had this conversation in my head several times. LOL The only thing I've ever wanted from anyone is a validation and to be seen and heard just like anyone else. I'll take the pills, go see the doctors, and pay the medical bills. No one else can do that for me. A friend on the car ride would be nice once in a while. A pre-made gluten free dinner as a surprise is cool. Hint-hint :) Kidding. In the end, really its about friendship and human kindness. Sending some sunshine somebody's way for no particular reason. Not because I have Lyme Disease, but because I happen to cross your mind. I wish more of us would prescribe to the popular bumper sticker, "Spread Random acts of human kindness." This world would be a better place. Also I have learned to choose my friends wisely and not rely on people who are broken hearted already. Its unfair to ask someone for support when they already have too much on their plate to begin with. My problem is now I make pretend everything's okay until one day I loose and it and cry. I think I talk more openly with my lyme friends about my daily struggles because they understand without much explanation and secondly I can say yucky details without them judging me or getting grossed out because they have weird, yucky symptoms too. Thank goodness for my Lyme's on Facebook, NING, Twitter, etc. Without all of you I would be lost. It helps to have a support group of those who understand.
Saturday, July 3, 2010
I find it interesting how I constantly have these nasty little things called expectations. I wish I didn't place them upon people or situations. Because I am constantly let down and disappointed. No one, including myself could ever measure up to my personal expectations. I don't understand why I keep placing them on everything. Life could care less how I think things should go. No one does. Its much easier to go with the flow and enjoy the fun bits that life has to offer. To live in the moment. I just wish I would stop doing this to myself. Its driving me crazy! Letting the expectations go can be hard though. Realizing you have to surrender is never easy. I never though I would still be taking meds to get rid of this Lyme. Its been over two years now and going. I thought I would have been done by now. Nope! That's one expectation that's gone right out the window! I think its okay to want people to treat you with kindness but to expect it is another story. Anything is possible when people are involved. I just wish I could have a break from this whole Lyme thing. One day even would be so nice. One day where everyone gets along, no money worries, no family drama, no chores, or things to do. I guess I'll have to wait till heaven then I am putting in my request for a new body for sure!
Tuesday, June 29, 2010
When I feel alive I laugh without restraint,
My face is relaxed,
And I can enjoy the moment with ease.
When I feel alive minutes pass like hours,
As if I were a part of slow motion film,
I treasure each moment without regret.
When I feel alive hugs and kisses are all I need,
The unselfish act and
The freely given heart melt me.
When I feel alive the colors around seem so vivid,
Each moment is a photograph that deserves a frame,
I am kept in wonder and amazement at the beauty surrounding me.
When I feel alive, Lyme Disease is a word that seems so far away from me.
I gladly take the vacation. (smile)
Friday, June 25, 2010
Sometimes I think I need to just keep going and stop complaining. I think a lot of times that's what other people want me to do. I feel like I am acting healthy when I feel so unhealthy. Its not fair. I just want to be me Lyme, crazy and all. I don't want my Lyme to be everything I am. I just wish my body would co-operate enough so I could do more physical things like getting my photography business going or working part time out of the house. I only have so much energy after taking care of my son. I am left with little at the end of the day. The money stress is really getting to me. One month we start to actually get ahead then all the medical bills hit and we are behind all over again. I am amazed how quickly money can fall out the window. It breaks my heart that I can't help contribute financially to my family. It makes me feel useless. I guess that's the dark truth of it all. It really does bring down my self worth too. I see myself as weak and lazy instead of courageous. Its hard to change my perspective when I'm paying bills. The thought of getting disability makes me feel defeated. I gave up so I'm trying to get disability. That's what it sounds like to me. I was brought up to be independent and take care of myself. No handouts. I am sick and tired of feeling so needy. I just feel burned out and weak. Useless.
Tuesday, February 9, 2010
I asked him again,
Have you taken enough,
I am at the end of my rope,
There is nothing that I take away,
That I don't replace ten fold.
But still the hurt became worse,
And again I asked him haven't you taken enough,
Again he answered,
I am like the black smith,
Who subjects gold to fire,
To remove its impurities,
To make it pure.
For the last time I asked him in complete agony,
Haven't you taken enough,
And he whispered,
I knew you couldn't take anymore,
So I started to carry you home.
You just didn't realize it yet.
Only the pure in heart can enter.
"6In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed." 1Peter 1:6-7
7But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9persecuted, but not abandoned; struck down, but not destroyed. 10We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 11For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body. 12So then, death is at work in us, but life is at work in you. 2 Cor. 4:7-9
Monday, January 11, 2010
I never realized the array of emotions that I would go through being chronically sick. I always thought that if I was sick all the time I would brave through it with no problems. I wish that was the case. Right now I am exhausted fighting this Lyme. I have completed 4 months of Omnicept and now I am on Cipro for the Bartonella Co-infection and testing for genetic celiac and gluten intolerance. So the new changes are not done yet. I may have a permanent lifestyle change when it comes to what I eat. I get worried what the results maybe say. I thought I would be over this Lyme thing by now. In May it will make it two years I've been in treatment. It wasn't suppose to take this long to get better. Now I wonder if I will ever get "better". Hope is slipping out of my fingers. I am scared of what the future holds. If I will be able to have more kids or not is foremost on my mind. I feel like I am watching that dream melt away. I need a new infusion of new hope and some new dreams to keep going on this road to recovery. Its a really long ride. I just want it to be over and its still here. Life is exhausting as it is. I don't need Lyme on top of it. But I have no choice in the matter. Some days I feel alone and hopeless. That is today. The finances stress me out and more medical bills drive me crazy. I am looking for peace and I am not finding it. I love my son and husband dearly but sometimes they just add more stress. When my Lyme makes me feel pretty yucky I can't stand to have them around because they always want something from me. I feel like I have nothing to give. I feel so empty. Its not their fault. I feel guilty because I become a dark cloud, depressed, witchy, grouchy, annoyed, etc. I can't stand being asked to give, when I can barely get myself through the day. I shouldn't feel this way but I do. I have to accept where I am at and its hard. I hate Lyme!