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 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,

Myths are broken,
raw truths
flopping on the ground.

Luke warm promises,
my hands.

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

Agony of body and mind,