We began our trip on Thursday, August 25, at 2:35 am. We needed to reach Reno by Sunday. I had driven to his home the previous afternoon and we had spent all night packing. I use this term lightly because you see, though I was packed neatly, and all my items obsessively labeled, he literally just threw a bunch of stuff in the car on top of mine. He packed barely any clothes and no shelter, but he brought a full computer, extra screen and all his photography equipment. I understood that he was working as a photographer for the burn but his apparent unpreparedness worried me. He seemed very erratic and easily distracted. He told me he had PTSD and ADD. He had a prescription for Adderall. But he also seemed very sweet and intelligent. Who am I to judge another's issues? I am bipolar after all. It tends to make me very tolerant of other people's oddities. So we began our trip.
It began well enough but went down hill quickly. We drove and drove until nightfall again and somewhere in Missouri I decided we needed a good night's sleep, so I paid for a motel. I woke up the next morning to find him still awake having not slept at all. We got on the road and I continued to watch in concern as he also wasn't eating. I began to be a little uneasy as he kept popping more and more of his Adderall. On no sleep and no food. In Kansas right before we hit Nebraska the car broke down. I wasn't alarmed because he rationally figured out that the oil change he got before we left must have been done incorrectly. You see he has a turbo and the car was acting like it had regular oil in it instead of synthetic. This causes things to gunk up and over heat. When the car cooled we got back on the road and headed to our hotel we already had booked in Nebraska. We knew we would have to get the car looked at the next day. I thought the issue was decided on. I went to sleep.
I woke up the next morning to find him still awake after obsessively spending the entire night researching his engine online, calling his mother to yell at her about the oil change (she's the one who took the car to the mechanic for him), posting inflammatory and histrionic statements on facebook, and then finally getting a call from his father and yelling at him too for "taking his mother's side". I managed to get him calmed down and in the car but it was 1:00 pm at this point. I was getting seriously annoyed but kept it well hidden so as not to antagonize him further. We took the car to jiffy lube where I paid for an engine flush and fresh synthetic oil. The car fixed, I now turned my attention on my driver. He was unkempt, wild-eyed, and rambling at this point. He continued to pop Adderall like vitamins. Again on no sleep and no food. He was convinced we could push through and hit Reno by Sunday evening. After a heated argument in a parking lot we got on the road. He kept occasionally accusing me of saying things I hadn't really said, starting irritating yet small arguments. I humored him to shut him up. I just wanted to get to Reno. It became a mantra in my head. Reno. Reno. Reno. I thought he was just obsessing about this as well and would calm down and get some rest once we hit Reno. I had never wanted to see a city more.
Thursday, November 17, 2011
Tuesday, November 8, 2011
My Epic Journey Home - Part One
(To be told in increments, it's a long story. My apologies for any typos.)
I want to share the story of my journey to Burning Man this year. But for me the journey started all the way back at the new year. So many things shaped the eventual way I got to and participated in the burn this year. So many people helped me along the way. I want to tell this story as a thank you to all those people. And as a way for me to process all the many things I experienced along the way as well. If you choose to take the time out of your day and read what I share then I thank you as well.
My year began with a scary diagnosis. 6 hernias in my spine (3 lower lumbar and 3 cervical) as well as numerous other problems. I think I handled it well. I cried for 5 minutes then went back to work. My life began to change in scary ways. On the one hand was the happy news that I finally knew what was wrong with me and that my doctors now knew as well and were taking me seriously all of a sudden. It was nice to not be dismissed anymore. On the other hand, I had to reduce my hours at work and begin physical therapy. I had to begin using a cane and sometimes even a walker. I got a handicap placard for my car. I had to ask for help sometimes even to get dressed or shower. The change that was hardest for me was learning to ask for and accept the help that I so obviously needed. After 6 months of PT and little improvement I had to face the fact that I couldn't work anymore. At least not as I was. I began to train my replacement and then finally in June left on disability leave. It was painful and a relief all at the same time to leave that daily struggle behind. I had spent the last 4 years of my life partly defining myself as an executive assistant though. What was I now?
I spent the first few days of my new work free schedule letting depression and anxiety rule my thoughts. I had been planning since missing Burning Man 2010 (due to the as yet undiagnosed spinal injury and its side effects) to attend in 2011. That hope was beginning to die. I continued seeing my doctors and was referred to a neurosurgeon. The surgeon recommended a triple cervical fusion of the vertebrae in my neck. In July I was in yet another car accident and my surgery had to be postponed until we could get the new swelling in my neck down and take yet another MRI.
At this point I decided I was going to Burning Man even if it killed me. I needed something happy to plan for. You see, I have a deathly fear of hospitals and medical procedures. It is a phobia that grew out of childhood experience. At the age of 11 I spent 2 years watching my best friend wither away in a cancer ward. She survived but the trauma never left me. I knew that without a sufficiently exciting distraction that I would talk my self out of the surgery that I so desperately needed. So you see Burning Man became an important step in my eventual rehabilitation.
I bought my ticket and began the long process of figuring out how to get there. I had little money. I had no credit card. I can't drive for very long. Hell, I can't even sit up for very long. I researched flights. I posted ride shares. I talked
to friends and strangers alike about going with me. Each day that passed was filled with thoughts of the burn and all the details that go into such a plan. I was happy. One day might just be writing a list. Another day, a trip to Goodwill. I sold items I no longer needed on eBay. I did small jobs for my family, like babysit my nephew, to raise money.
I was constantly contacted by interested people for ride shares who would then not respond once I got back to them. My funds were still too low. My disability payments were coming in sporadically and had to be first used to make my health insurance payments. I was frustrated and really worried that maybe I wouldn't be able to go to the burn after all. I was to my horror becoming quite maudlin and self-pitying. I determined to suck it up and just sell my ticket and not go.
Literally right after I made this decision everything changed. My brother and sister-in-law came to me and said that they understood how important the burn was to me this year and knew I needed money. They gave me $600. My parents came back from a trip during which I watched their house and dogs. I did this because they are family and I am happy to help. My father proceeded to pay me $400. I literally fell to the floor and started crying when he gave me the money. All my items sold on eBay and I netted another $160. I now had plenty of money, but no way to get me, all my gear, my clothes, and my bike to the burn. I started to reach out to other people offering rides. I was desperate to go and just needed a ride. I managed to get in contact with one of the Washington DC regional heads and he hooked me up with someone whose ride along had just pulled out on them. I needed a driver and he needed gas money. It also turned out I knew this person as an acquaintance. He was friends with many of my friends and I felt very comfortable after a few long talks about driving across the country with him. Everything seemed to finally be working out.
I want to share the story of my journey to Burning Man this year. But for me the journey started all the way back at the new year. So many things shaped the eventual way I got to and participated in the burn this year. So many people helped me along the way. I want to tell this story as a thank you to all those people. And as a way for me to process all the many things I experienced along the way as well. If you choose to take the time out of your day and read what I share then I thank you as well.
My year began with a scary diagnosis. 6 hernias in my spine (3 lower lumbar and 3 cervical) as well as numerous other problems. I think I handled it well. I cried for 5 minutes then went back to work. My life began to change in scary ways. On the one hand was the happy news that I finally knew what was wrong with me and that my doctors now knew as well and were taking me seriously all of a sudden. It was nice to not be dismissed anymore. On the other hand, I had to reduce my hours at work and begin physical therapy. I had to begin using a cane and sometimes even a walker. I got a handicap placard for my car. I had to ask for help sometimes even to get dressed or shower. The change that was hardest for me was learning to ask for and accept the help that I so obviously needed. After 6 months of PT and little improvement I had to face the fact that I couldn't work anymore. At least not as I was. I began to train my replacement and then finally in June left on disability leave. It was painful and a relief all at the same time to leave that daily struggle behind. I had spent the last 4 years of my life partly defining myself as an executive assistant though. What was I now?
I spent the first few days of my new work free schedule letting depression and anxiety rule my thoughts. I had been planning since missing Burning Man 2010 (due to the as yet undiagnosed spinal injury and its side effects) to attend in 2011. That hope was beginning to die. I continued seeing my doctors and was referred to a neurosurgeon. The surgeon recommended a triple cervical fusion of the vertebrae in my neck. In July I was in yet another car accident and my surgery had to be postponed until we could get the new swelling in my neck down and take yet another MRI.
At this point I decided I was going to Burning Man even if it killed me. I needed something happy to plan for. You see, I have a deathly fear of hospitals and medical procedures. It is a phobia that grew out of childhood experience. At the age of 11 I spent 2 years watching my best friend wither away in a cancer ward. She survived but the trauma never left me. I knew that without a sufficiently exciting distraction that I would talk my self out of the surgery that I so desperately needed. So you see Burning Man became an important step in my eventual rehabilitation.
I bought my ticket and began the long process of figuring out how to get there. I had little money. I had no credit card. I can't drive for very long. Hell, I can't even sit up for very long. I researched flights. I posted ride shares. I talked
to friends and strangers alike about going with me. Each day that passed was filled with thoughts of the burn and all the details that go into such a plan. I was happy. One day might just be writing a list. Another day, a trip to Goodwill. I sold items I no longer needed on eBay. I did small jobs for my family, like babysit my nephew, to raise money.
I was constantly contacted by interested people for ride shares who would then not respond once I got back to them. My funds were still too low. My disability payments were coming in sporadically and had to be first used to make my health insurance payments. I was frustrated and really worried that maybe I wouldn't be able to go to the burn after all. I was to my horror becoming quite maudlin and self-pitying. I determined to suck it up and just sell my ticket and not go.
Literally right after I made this decision everything changed. My brother and sister-in-law came to me and said that they understood how important the burn was to me this year and knew I needed money. They gave me $600. My parents came back from a trip during which I watched their house and dogs. I did this because they are family and I am happy to help. My father proceeded to pay me $400. I literally fell to the floor and started crying when he gave me the money. All my items sold on eBay and I netted another $160. I now had plenty of money, but no way to get me, all my gear, my clothes, and my bike to the burn. I started to reach out to other people offering rides. I was desperate to go and just needed a ride. I managed to get in contact with one of the Washington DC regional heads and he hooked me up with someone whose ride along had just pulled out on them. I needed a driver and he needed gas money. It also turned out I knew this person as an acquaintance. He was friends with many of my friends and I felt very comfortable after a few long talks about driving across the country with him. Everything seemed to finally be working out.
Wednesday, October 26, 2011
Welcome Back
I've been away quite awhile because shortly after my last post my health took a turn for the worse. I became almost incapacitated by the pain I was in as well as being barely able to walk due to pain in my leg and weakness. I was referred to a spinal specialist and pain management center. I thought it was just going to be more pills for the fibro and the usual run around. To my surprise I finally found out what had been causing so much of my pain and problems for so many years.
The spinal specialist said I very obviously had some sort of spinal injury and ordered MRIs of both my lower lumbar and neck. We discovered 3 herniated disks in each area for a total of 6 disks causing me problems. We immediately began therapeutic medicines and physical therapy. My leg improved but my neck seemed to get worse. The more they tried to touch it or have me exercise it the worse it got. I was referred to a neurosurgeon who told me I would need a triple cervical fusion of the vertebrae in my neck. He felt this was the only thing that may improve my lot and bring me some relief. This was in April of 2011.
I had already reduced my hours at work at this point using FMLA. I was barely coping even with a reduced schedule. I warned them they needed to find a replacement because I was going to have to leave eventually on full disability. I felt horrible leaving a position I had been in for four years and worked so hard at. I had truly established a career finally. But it was not to be. I left for good on June 16th, 2011. On July 4th I was rear ended again. My neck at this point was incapacitating me. The pain was unbearable. Another MRI had to be done to assess the damage before we could even begin to discuss surgery again. Yet during all of this I was still convinced I was going to make it to Burning Man at the end of August.
The spinal specialist said I very obviously had some sort of spinal injury and ordered MRIs of both my lower lumbar and neck. We discovered 3 herniated disks in each area for a total of 6 disks causing me problems. We immediately began therapeutic medicines and physical therapy. My leg improved but my neck seemed to get worse. The more they tried to touch it or have me exercise it the worse it got. I was referred to a neurosurgeon who told me I would need a triple cervical fusion of the vertebrae in my neck. He felt this was the only thing that may improve my lot and bring me some relief. This was in April of 2011.
I had already reduced my hours at work at this point using FMLA. I was barely coping even with a reduced schedule. I warned them they needed to find a replacement because I was going to have to leave eventually on full disability. I felt horrible leaving a position I had been in for four years and worked so hard at. I had truly established a career finally. But it was not to be. I left for good on June 16th, 2011. On July 4th I was rear ended again. My neck at this point was incapacitating me. The pain was unbearable. Another MRI had to be done to assess the damage before we could even begin to discuss surgery again. Yet during all of this I was still convinced I was going to make it to Burning Man at the end of August.
Tuesday, August 10, 2010
30 Things About My Invisible Illness You May Not Know
http://networkedblogs.com/6IWIn
1. The illness I live with is: Bipolar Disorder, Narcolepsy, Fibromyalgia
2. I was diagnosed with it in the year: 1992, 2005, 2006
3. But I had symptoms since: Forever, Forever, 2003
4. The biggest adjustment I’ve had to make is: Everything. My whole life has had to be rescheduled around my illnesses. My job, my relationships, my hobbies, everything.
5. Most people assume: Nothing is wrong with me. Outwardly I don't look sick, they see someone who holds down a full-time job, raises a family, and still has a life. They don't see all the things I sacrifice to have what I do.
6. The hardest part about mornings are: Getting out of bed. I am always exhausted, get little to no sleep, and hurt everywhere. Once I am out of bed doing my hair is often a chore. I have a torn rotator cuff and it makes blow drying and straightening something I have to work at.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my blackberry
9. The hardest part about nights are: The long endless hours where I can't sleep and all I do is lay and stare at a wall, or rub at a sore spot and cry while trying not to wake up my boyfriend.
10. Each day I take 11-15 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: do Yoga and Dance, exercise like crazy, have tried and wish to try again acupuncture, take herbal and nutrition supplements for my bipolar disorder.
12. If I had to choose between an invisible illness or visible I would choose: How can you pick one? Any illness has its ups and downs. I don't want to be ill at all. I feel lucky for not being any worse than I am.
13. Regarding working and career: I work full time in a field I have no interest in because that is what suits the schedule I have to keep. I miss tons of work and thankfully have an understanding company who is just happy that all my work is done and done well. I often make myself ill trying to work full time and then have to sacrifice time with my family to rest or recover.
14. People would be surprised to know: How hurt I really get by casual dismissive comments. I never let it show on the outside but I have been really wounded by the way some people have behaved towards me and my disabilities.
15. The hardest thing to accept about my new reality has been: the sacrifices. The things I have to give up or parcel out in increments. Having to try to explain to my kid why I can't do something with them breaks my heart.
16. Something I never thought I could do with my illness that I did was: raise a child. I've been a nanny in the past but I still wasn't sure I would ever be able to be a mom. But I have been very lucky and have a wonderful step-son.
17. The commercials about my illness: are kinda silly. Especially the bipolar or depression ones. Everything seems to take place in a rainy dreary atmosphere with moping women and sad looking family members. It gets a little soap-opery. The fibro commercials seem pretty spot on sometimes. I've never seen a narcolepsy commercial.
18. Something I really miss doing since I was diagnosed is: surfing. Since the fibro and rotator cuff tear I have not been able to get back on a board yet though I am still hopeful for the future. My balance has been really affected and I can't currently paddle with my shoulder busted up.
19. It was really hard to have to give up: having a wacky schedule. I used to come and go whenever I wanted to, travel when I wanted to, now everything has to be so regimented and planned. It gets a little boring.
20. A new hobby I have taken up since my diagnosis is: running. I was never a runner before but now I love my treadmill and use it as my primary source of cardio. I never thought I would like running.
21. If I could have one day of feeling normal again I would: go to the ocean and paddle out on a surf board.
22. My illness has taught me: to appreciate the little things. To let go of some things and not get so worked up. To really cherish the wonderful people in my life.
23. Want to know a secret? One thing people say that gets under my skin is: You take too many pills. Like I have a choice. Like being in pain and out of my mind, and asleep all the time is a viable option for every day living.
24. But I love it when people: compliment my hard work and acknowledge how much harder I may have had to work for something an able-bodied person wouldn't have. It's nice to know people notice my efforts and appreciate what I do.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't have one. I kinda think that's just silly. As if some magical phrase will make me feel better.
26. When someone is diagnosed I’d like to tell them: don't let it be the end of your world. There is so much more out there and so many ways to get around or overcome obstacles. And don't push people away. Keep loved ones close cause when you need someone to lean on, they'll be there.
27. Something that has surprised me about living with an illness is: how many more people are just like me. It is gratifying to know I am not alone and so many more have gone before me and succeeded.
28. The nicest thing someone did for me when I wasn’t feeling well was: I can't begin to narrow this down to one thing. My family and friends have made this all bearable. The nicest thing they've done is be themselves, be there for me, help me every day and not abandon me during the worst times.
29. I’m involved with Invisible Illness Week because: I feel more people need to be aware of the people every day around them struggling with a disability. Even the ones they can't obviously see. You never know who might need your help or understanding.
30. The fact that you read this list makes me feel: appreciated and heard.
1. The illness I live with is: Bipolar Disorder, Narcolepsy, Fibromyalgia
2. I was diagnosed with it in the year: 1992, 2005, 2006
3. But I had symptoms since: Forever, Forever, 2003
4. The biggest adjustment I’ve had to make is: Everything. My whole life has had to be rescheduled around my illnesses. My job, my relationships, my hobbies, everything.
5. Most people assume: Nothing is wrong with me. Outwardly I don't look sick, they see someone who holds down a full-time job, raises a family, and still has a life. They don't see all the things I sacrifice to have what I do.
6. The hardest part about mornings are: Getting out of bed. I am always exhausted, get little to no sleep, and hurt everywhere. Once I am out of bed doing my hair is often a chore. I have a torn rotator cuff and it makes blow drying and straightening something I have to work at.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my blackberry
9. The hardest part about nights are: The long endless hours where I can't sleep and all I do is lay and stare at a wall, or rub at a sore spot and cry while trying not to wake up my boyfriend.
10. Each day I take 11-15 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: do Yoga and Dance, exercise like crazy, have tried and wish to try again acupuncture, take herbal and nutrition supplements for my bipolar disorder.
12. If I had to choose between an invisible illness or visible I would choose: How can you pick one? Any illness has its ups and downs. I don't want to be ill at all. I feel lucky for not being any worse than I am.
13. Regarding working and career: I work full time in a field I have no interest in because that is what suits the schedule I have to keep. I miss tons of work and thankfully have an understanding company who is just happy that all my work is done and done well. I often make myself ill trying to work full time and then have to sacrifice time with my family to rest or recover.
14. People would be surprised to know: How hurt I really get by casual dismissive comments. I never let it show on the outside but I have been really wounded by the way some people have behaved towards me and my disabilities.
15. The hardest thing to accept about my new reality has been: the sacrifices. The things I have to give up or parcel out in increments. Having to try to explain to my kid why I can't do something with them breaks my heart.
16. Something I never thought I could do with my illness that I did was: raise a child. I've been a nanny in the past but I still wasn't sure I would ever be able to be a mom. But I have been very lucky and have a wonderful step-son.
17. The commercials about my illness: are kinda silly. Especially the bipolar or depression ones. Everything seems to take place in a rainy dreary atmosphere with moping women and sad looking family members. It gets a little soap-opery. The fibro commercials seem pretty spot on sometimes. I've never seen a narcolepsy commercial.
18. Something I really miss doing since I was diagnosed is: surfing. Since the fibro and rotator cuff tear I have not been able to get back on a board yet though I am still hopeful for the future. My balance has been really affected and I can't currently paddle with my shoulder busted up.
19. It was really hard to have to give up: having a wacky schedule. I used to come and go whenever I wanted to, travel when I wanted to, now everything has to be so regimented and planned. It gets a little boring.
20. A new hobby I have taken up since my diagnosis is: running. I was never a runner before but now I love my treadmill and use it as my primary source of cardio. I never thought I would like running.
21. If I could have one day of feeling normal again I would: go to the ocean and paddle out on a surf board.
22. My illness has taught me: to appreciate the little things. To let go of some things and not get so worked up. To really cherish the wonderful people in my life.
23. Want to know a secret? One thing people say that gets under my skin is: You take too many pills. Like I have a choice. Like being in pain and out of my mind, and asleep all the time is a viable option for every day living.
24. But I love it when people: compliment my hard work and acknowledge how much harder I may have had to work for something an able-bodied person wouldn't have. It's nice to know people notice my efforts and appreciate what I do.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't have one. I kinda think that's just silly. As if some magical phrase will make me feel better.
26. When someone is diagnosed I’d like to tell them: don't let it be the end of your world. There is so much more out there and so many ways to get around or overcome obstacles. And don't push people away. Keep loved ones close cause when you need someone to lean on, they'll be there.
27. Something that has surprised me about living with an illness is: how many more people are just like me. It is gratifying to know I am not alone and so many more have gone before me and succeeded.
28. The nicest thing someone did for me when I wasn’t feeling well was: I can't begin to narrow this down to one thing. My family and friends have made this all bearable. The nicest thing they've done is be themselves, be there for me, help me every day and not abandon me during the worst times.
29. I’m involved with Invisible Illness Week because: I feel more people need to be aware of the people every day around them struggling with a disability. Even the ones they can't obviously see. You never know who might need your help or understanding.
30. The fact that you read this list makes me feel: appreciated and heard.
Wednesday, July 14, 2010
No sleep til...
Another death. More stress and worry. More illness. This is overwhelming. For the first time in 31 years I am voluntarily considering counseling. My history with therapy is not pretty but I think I may need it. My sleep cycle is completely ruined. My mood is low. My stress is high. It is time to ask for help.
Thursday, July 1, 2010
Playing Catch-up
I've been in a funk the last month. Between unbelievable actions at work which have made me lose a lot of respect for certain individuals and a month long bout of bursitis pain in my hip I am one unhappy camper.
When I cycle downward to a depressed state because of my bipolar disorder I know what to do, how to deal. But this malaise I am feeling in regards to real life events which I have no control over...I don't know what to do with that. It is a singularly unpleasant feeling.
I have to find a way to combat the suck ass events going on right now.
When I cycle downward to a depressed state because of my bipolar disorder I know what to do, how to deal. But this malaise I am feeling in regards to real life events which I have no control over...I don't know what to do with that. It is a singularly unpleasant feeling.
I have to find a way to combat the suck ass events going on right now.
Thursday, May 13, 2010
Aftermath
An acquaintance has committed suicide. I don't even quite know how to process this. It was unexpected. I feel I am taking it harder than I should. I feel maybe I am taking it so hard because of my own history of suicide attempts. I don't know. This is just a really awful Thursday.
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