I awake today with thoughts swirling in my head. Today is "the day" that a year ago my life dramatically changed. I remember it so clearly. After sitting at the computer for hours doing some medicaid billing for work I got up and felt as if someone had punched me in the eyes. It hurt a lot and it felt like nothing I had experienced before. Well, that is not totally true. I think that a few weeks prior it had happened for a short time and then went away. I thought it strange but then quickly moved on. This time was different though, it was unrelenting. I did EVERYTHING from ignoring it, to working on the "emotional reasons" to why this could have happened (what was I afraid to see or what wasn't I seeing or what was I supposed to see?). I ignored it, I rested my eyes, I went to the eye doctor. And yet, the "punched in the eyes" feeling continued. On the fifth day it shifted. Little did I know that a year later I would still recognize this not so dear friend, Mr. Headache. The headache that has at times engulfed my life came and has not left. I have had a few headache free weeks but basically have had a headache for a YEAR. Okay, that is ridiculous!
When I talk to you and laugh and giggle, do I still have a headache? Yup. Usually somewhere between a 4-6 on a 1-10 scale. When it gets higher than that you can tell how sick I feel. My tolerance for pain has skyrocketed. What I can live with, function with, and take as a "good day" is, well, outrageous! I know many people in this world live in excruciating pain every day. Hats off to them -- really. It is beyond difficult to interact in this world when doing it through a veil of pain. Please remember this when someone seems spacey or crabby or just not-so-nice. Maybe they are living with pain that you just don't see. This is a dear lesson that I will never forget.
Wow, there are just so many thoughts rambling through this head of mine! I could just babble on for hours. I will attempt to wrangle in some of these thoughts into cohesive concepts. Okay, what is my point? My point is to say that over a year ago I was a woman with health issues but basically I functioned, most of the time, without you knowing about it. Since then, my health and my life has become an open book for the world to see. The eye pain and then headache became so severe that it was impossible to hide it. The series of events that occurred due to this transparency have been amazing!
In the following months I opened up at work and was showered by support, love and financial contributions. I experienced so many ups and downs with the medical community while trying to seek out a diagnosis for (at the time) for a massive 2 month headache. I started to reach out to my community, through facebook, since I was mostly bed-ridden and was touched by the support I received back. I discovered, through facebook, how helpful it was to be to write about what was happening and to have others read it and respond. I had no idea at the time how much this (facebook ranting and this blog) would become a part of my life and my healing. Eventually I found online support groups that have really become family. They have helped and supported me and given me an opportunity to connect with and support others like me.
When I think back to where I was before March 21st of 2011, the most glaring change is that I had no idea what was wrong with me. My health had slowly declined over 17 years with many diagnoses along the way, but there was no link to stop the decline. I just kept coping as best I could and dealing with various symptoms as they arose. But, when this headache came there was no turning back. Life became too painful and I had to find out what was happening. By grace alone, I was led to a doctor who was an angel for me. He diagnosed me with late stage (chronic) Lyme Disease. We started on a journey together discovering the nuances of Lyme and how to treat it. We stumbled - oh did we stumble - but we kept going.
I kept going, my family kept going, through seemingly insurmountable difficulties at times. The lows were lower than we ever could have imagined, and yet we survived. It was harder on me and my family than I will EVER be able to put into words. I have tried, but trust me, they are completely inadequate! The physical and emotional pain have been off the charts. But, somehow we have survived and continue to grab those f-ing boot straps and keep moving forward.
I have watched my community support me in ways I never would have imagined. I have also seen friends fall away or become awkward in their communication towards me. I know it is difficult to be around someone that is always sick. But trust me, as difficult as it is, it is much harder to be always sick! I have been blessed beyond measure by an incredible spiritual teacher who has supported me more than I ever could have imagined. Really I could go on forever about my family, my friends, my co-workers, my spiritual community. It has been breathtaking to watch. This is still an intensely lonely journey, but having you along with me has been beautiful. Having met people on-line with little to no support through this process, I am humbled and forever grateful to everyone that has helped me through this last year! I thank you.
I also thank you for coming along with me on this journey. I have openly shared - more than I ever thought possible - the nuances of this journey. It was spontaneous and never calculated. Why? Hmmm, really I am not sure. I think partly it has been a way of healing for me and partly a way to share with the world what it is really like to be sick with Lyme disease. There have been brave warriors go before me and share about cancer, but few in this community know what Lyme disease looks like. Now hopefully a few more people know. If that leads to a smidgen more of compassion and understanding to those that are ill --- well then, mission accomplished.
I know I am writing a lot. Be patient...I am almost done! Perfect word choice. Done. Those four letters have taken on many meanings the last few weeks. This treatment over the last year has been slower, more complicated, more expensive and more painful than I ever could have imagined. Just two weeks ago I had a severe increase in my symptoms and quite possibly had the worst head pain (and other symptoms that come along for the ride) of my life. The next week I found out that my beloved doctor was moving to Seattle. I felt as if my house of very fragile cards was tumbling down. I wanted to be done. Done with treatment, done with being sick and done with having to find doctors/practitioners to help me.
This being "done" has led to many shifts in my healing. I will write about this more in the coming weeks. For now I will just say that everything seems to be cosmically lining up. Doors are flying open. There are choices to make. I pray the guidance will come and the choices in treatment will be clear. I am done. Done with this chapter. Year one - over. What's up next? Really I have no idea. I do know I can't repeat the physical and emotional pain of this last year. It is time for a dramatic change. Gentleness is the word that keeps showing up. Gentleness in my healing. I have been at war with my body. My body is done with that. I am done with that. Time to shift and work together a bit more ---- gently. I amazed at how it is all lining up and pray that this continues.
What will continue is my amazement and gratitude for this last year. As difficult as it has been, as dark and painful and frightening -- I am grateful. With gratitude, I intentionally and deliberately close that door, end this chapter today. Today I open a new chapter of gentle healing. This is the year I will get healthy. I know it. Happy Anniversary.
When I talk to you and laugh and giggle, do I still have a headache? Yup. Usually somewhere between a 4-6 on a 1-10 scale. When it gets higher than that you can tell how sick I feel. My tolerance for pain has skyrocketed. What I can live with, function with, and take as a "good day" is, well, outrageous! I know many people in this world live in excruciating pain every day. Hats off to them -- really. It is beyond difficult to interact in this world when doing it through a veil of pain. Please remember this when someone seems spacey or crabby or just not-so-nice. Maybe they are living with pain that you just don't see. This is a dear lesson that I will never forget.
Wow, there are just so many thoughts rambling through this head of mine! I could just babble on for hours. I will attempt to wrangle in some of these thoughts into cohesive concepts. Okay, what is my point? My point is to say that over a year ago I was a woman with health issues but basically I functioned, most of the time, without you knowing about it. Since then, my health and my life has become an open book for the world to see. The eye pain and then headache became so severe that it was impossible to hide it. The series of events that occurred due to this transparency have been amazing!
In the following months I opened up at work and was showered by support, love and financial contributions. I experienced so many ups and downs with the medical community while trying to seek out a diagnosis for (at the time) for a massive 2 month headache. I started to reach out to my community, through facebook, since I was mostly bed-ridden and was touched by the support I received back. I discovered, through facebook, how helpful it was to be to write about what was happening and to have others read it and respond. I had no idea at the time how much this (facebook ranting and this blog) would become a part of my life and my healing. Eventually I found online support groups that have really become family. They have helped and supported me and given me an opportunity to connect with and support others like me.
When I think back to where I was before March 21st of 2011, the most glaring change is that I had no idea what was wrong with me. My health had slowly declined over 17 years with many diagnoses along the way, but there was no link to stop the decline. I just kept coping as best I could and dealing with various symptoms as they arose. But, when this headache came there was no turning back. Life became too painful and I had to find out what was happening. By grace alone, I was led to a doctor who was an angel for me. He diagnosed me with late stage (chronic) Lyme Disease. We started on a journey together discovering the nuances of Lyme and how to treat it. We stumbled - oh did we stumble - but we kept going.
I kept going, my family kept going, through seemingly insurmountable difficulties at times. The lows were lower than we ever could have imagined, and yet we survived. It was harder on me and my family than I will EVER be able to put into words. I have tried, but trust me, they are completely inadequate! The physical and emotional pain have been off the charts. But, somehow we have survived and continue to grab those f-ing boot straps and keep moving forward.
I have watched my community support me in ways I never would have imagined. I have also seen friends fall away or become awkward in their communication towards me. I know it is difficult to be around someone that is always sick. But trust me, as difficult as it is, it is much harder to be always sick! I have been blessed beyond measure by an incredible spiritual teacher who has supported me more than I ever could have imagined. Really I could go on forever about my family, my friends, my co-workers, my spiritual community. It has been breathtaking to watch. This is still an intensely lonely journey, but having you along with me has been beautiful. Having met people on-line with little to no support through this process, I am humbled and forever grateful to everyone that has helped me through this last year! I thank you.
I also thank you for coming along with me on this journey. I have openly shared - more than I ever thought possible - the nuances of this journey. It was spontaneous and never calculated. Why? Hmmm, really I am not sure. I think partly it has been a way of healing for me and partly a way to share with the world what it is really like to be sick with Lyme disease. There have been brave warriors go before me and share about cancer, but few in this community know what Lyme disease looks like. Now hopefully a few more people know. If that leads to a smidgen more of compassion and understanding to those that are ill --- well then, mission accomplished.
I know I am writing a lot. Be patient...I am almost done! Perfect word choice. Done. Those four letters have taken on many meanings the last few weeks. This treatment over the last year has been slower, more complicated, more expensive and more painful than I ever could have imagined. Just two weeks ago I had a severe increase in my symptoms and quite possibly had the worst head pain (and other symptoms that come along for the ride) of my life. The next week I found out that my beloved doctor was moving to Seattle. I felt as if my house of very fragile cards was tumbling down. I wanted to be done. Done with treatment, done with being sick and done with having to find doctors/practitioners to help me.
This being "done" has led to many shifts in my healing. I will write about this more in the coming weeks. For now I will just say that everything seems to be cosmically lining up. Doors are flying open. There are choices to make. I pray the guidance will come and the choices in treatment will be clear. I am done. Done with this chapter. Year one - over. What's up next? Really I have no idea. I do know I can't repeat the physical and emotional pain of this last year. It is time for a dramatic change. Gentleness is the word that keeps showing up. Gentleness in my healing. I have been at war with my body. My body is done with that. I am done with that. Time to shift and work together a bit more ---- gently. I amazed at how it is all lining up and pray that this continues.
What will continue is my amazement and gratitude for this last year. As difficult as it has been, as dark and painful and frightening -- I am grateful. With gratitude, I intentionally and deliberately close that door, end this chapter today. Today I open a new chapter of gentle healing. This is the year I will get healthy. I know it. Happy Anniversary.
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