Another pen moment

On Thursday, I sat down and again put pen to paper.

I am feeling hesitation. I live in the state of doubt and uncertainty. Early this year, I tentatively thought that I had overcome the worst and yet was extremely hopeful that tomorrow would be better than the day before. At times others' expectations are higher than I can reach with my Borrelia filled body. Trying to be courageous, I push myself past my own limitations by cruising past my breaking point.

Because I have seen such good days, my own expectations are higher today than they were three years ago. It is not uncommon for me to hide the pain instead of exposing it for the world to see in moments of weakness. So the thought of becoming one with the ugly green chair in the communal IV room brings me dread. It's the knowledge that I would be confined to that chair by the IV's that sustain my life that terrifies me. I thought I was past the stage of Lyme where another person would see me at my weakest.

Even though it's difficult, I remember the days that I had to allow someone else to carry my lifeless body home and leave me there alone. Petrified by the thought I might not wake from my mini Benedryl coma, I would fight through the exhaustion to stay awake. Mr. Sandman always won that battle and I would drift off finally waking 12 hours later thankful to be alive.

I'm grateful that I've been IV free for over a year, but wish that I could extend this outcome a little further out. In a way, I got my wish when my first treatment was postponed. Knowledge is power. I know pretty much what will happen and I know that by two or three days after this treatment that I will feel so much better. I don't think this will happen, I expect it will. Like I said, my own expectations are higher.

Sharing my thoughts

The past few days I have been doodling my thoughts down on paper. I have been writing just to get the stuff out of my head. Before the internet and computer ages, this is what I would do if I had a spare moment. I really don't put pen to paper that often anymore, but this week I have been spending a lot of time writing things down.

I'm a little embarrassed because I think one of those papers I left on a desk at work. I hope I didn't, but I bet I did. EEKS. One thing that I wrote on Monday two days after I found out that my blood was not in desirable range. It was when I thought that I may have been actively bleeding for months. It was also two days after I realized that Lyme lives in me still and is just waiting to come out to play.

So without futher ado:

As a single tear plops down the side of my cheek, I realize I am teetering on the edge again. Borrelia burgdorferi bounces between the cells of my being and I wonder if my body is failing me again. I just know that Lyme is having a ball kicking around on the inside. My "friends" have taken up residence in every muscle, bone and cell. Not even one doctor has figured out how to serve an eviction notice to these guests that refuse to leave.

There are so many questions asked and very few answers given. You would think by now that the doctors and researchers would have the answer to the biggest question of all. How do you rid a patient's body of Borrelia burgdorferi? Each doctor struggles to provide their unique patient with a key to the quality of life. With the test of each blood droplet, I wonder if it will ever truly be gone. Will the mark of Lyme ever disappear from my body? Will my soul ever know life without Lyme?

Lyme keeps taking things away from me. It thrives on each breath I take and I ponder if it's better to understand this illness or keep on living in the darkness where the Borrelia lives. I feel my life spiraling out of control each passing day and yet feel gratitude each morning when my eyes reopen and I realize that I am awake again.

Even though Lyme has taken many things away, it has also provided me with the opportunity to appreciate every moment I have and take every chance I can to educate others about this devastating illness. Education is the key to the prevention of Lyme. If those with Lyme would speak out to others about the effects of this illness, then others would be aware that this exists.

My Friday

I try really hard to be positive. A few years ago, one of my closest friends asked me one question in a gentle tone and a hug, "Why don't you ever smile anymore? I miss that smile of yours." That one statement and question gave me the kick in the butt I needed. I gave myself two rules. The first rule is that I *must* smile at least once a day. The second rule is that I *must* cause someone else to smile at least once a day. I had a really great week. My health was wonderful. The only complaint I possibly had was a small sore throat and stuffy nose. Three years ago, I would have killed for ONLY a sore throat and stuffy nose.

I was in a perfectly good mood all week (especially from meeting Eric Montross on Wednesday) and then Friday happened. I woke up from a terrible nightmare. Since my dreams tend to come true, it put me on edge right away. I got to work and everything seemed to go wrong. I got home and got more news that put me over the edge. To top it off, my favorite work pants ripped in the knee. Most of my work pants either have holes or don't fit. It's very frustrating. Last year this time, I bought new pants and NONE of those pants fit any more.

Since I needed gas and had a check to put in the bank, I decided to go ahead and get it out of the way. Well as I passed the Goodwill store, I realized that I could stop by and see if by chance they had some pants I could get for work. Retail therapy is always good, but it's not good when you don't have the money to spend on pants that may not fit in a year (sometimes they don't fit even a month after I buy them which seems so unfair). So I went straight to the khaki's and started looking through the huge rack of them hoping to find something to try on. I found 8 pair that *might* fit out of all the khaki's they had. Four pair fit pretty well so I walked out with 4 pair of pants (3 of them are from Gap) for around 14 dollars.

Now as I was there at Goodwill, there was a lady scouring through the same pair of pants that I was. She was filled with anger. Her mood was definitely in the air. She would angrily pull off one pair of pants go into the dressing room and come back and slam them back on the rack. She did this a few times. Another lady came out of the 2nd dressing room and began speaking with her. The second lady was speaking kind of quietly while the first lady was screaming about how she TOLD HER there wouldn't be anything there that would fit. I was trying not to listen to their conversation, but it was so loud it was pretty much unavoidable. I realized very quickly that these two ladies knew each other.

Then, it happened. The second lady looked at the first lady and said "why do you have to be so negative all the time? Where did Anne go? I'm sure we can find something. Let's just keep looking." Then the first lady's face softened. They both started looking through the racks with kinder fingers. I wondered if Anne was struggling with a chronic illness. I wondered if she had gone through a decade plus of doctors ignoring her condition and if she was just struggling to maintain her weight. I wondered if she was, in that moment, where I was 2 years ago. If Anne is there right now, I hope that she'll be where I am in 2 years. Guess what happened next. Anne was in line behind me with 3 pair of pants, her friend and a smile. Guess Goodwill did have something for her after all. :o)

Pens & Paper Don't Feel

*** first this is extremely long and I apologize for that, but God has placed something on my heart that I must share ****

I have to say that I have spent most of my life feeling as if I didn't belong. I grew up in a very small town where I had extremely close friends. Then my family uprooted us and moved. We did not move far, but it was far enough that I lost all of my friends due to our ages (between 6th and 7th grade) and distance. I lived a very depressed life from 7th grade until 10th grade when I finally felt like I belonged to a group of people that liked me even if though I was different. However, I still spent most of the rest of my high school years extremely depressed. My best friend now saved my life then. He was not my best friend at the time, but I would not be here if God did not place him in my path then.

I have spent my life writing: writing journals, writing poetry, writing doodles, just writing. The poetry I read that I wrote in High School (and even college) are some of the most depressing pieces of works I have ever seen. I read them and can go back to the same feelings I felt back then. I hated the computer. The computer guru at college used to say "Oh no not her" when I'd come into the lab because within 15 minutes of me sitting at it .. the computer would die. I could never figure out how to turn a computer on much less write my college papers on them. I didn't belong at college. I had almost seizures daily and people made fun of me behind my back, but when I wrote ... I felt free.

I would sit in the chapel at church and write. Some letters, some poetry, anything to get the feelings out. I always felt better and not quite so alone after writing. It's like the pen & paper were my friends. It didn't matter what I wrote they would never get mad, upset or offended. My writings never made the pen & paper jealous or happy or anything. The Pen & Paper didn't have feelings. No one ever read them and I suppose no one ever will, but when I read about a boy and mangled flesh (circa 1997) it makes me cringe to see what was going through my noggin.

So once I became computer literate and unable to kill a computer in 15 minutes, it became crystal clear that I should write everything on the computer instead of in pen & paper. just write. That was my motto. I discovered emails, Instant Messenger, forums, myspace, facebook & a world of blogging. It opened my eyes to a whole new world of writing. A world in which others could view my thoughts. On one hand, I felt glad to share my inner most thoughts to people that cared ... but on the other hand it made me very vulnerable. Pen & Paper could never get hurt. People on the other hand. They could be hurt by my inner most thoughts.

I knew I would be able to write my inner most thoughts and feelings on Lyme forums and people would understand. About the same time as I found those Lyme forums, I found out about blogging. I knew I would never do this because I didn't really want the world to read my thoughts.

However I found in September of 2008 that I had a LOT to say. I could educate people who found my little piece of the world about Lyme Disease. The first comment I received from someone asking more about Lyme Disease made my heart feel good. My motto for my blog: Living life as full as I can with the skills that I have and the love I receive.


For now this is what is on my heart & soul. Pen & Paper don't get hurt, but people do.
Sometimes people say things that aren't intended to be hurtful and sometimes I write things that hurt others and it was not my intentions. I must first say that no one that has ever commented on this blog has EVER been hurtful. It was something else that happened today that produced this lengthy blog. Because when I hurt, I write. I write in journals, write poetry, write doodles, just write on my blog.

The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:28-31