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.
Wednesday, October 26, 2011
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.
Monday, April 26, 2010
My Weekend
I don't really want to talk about it. But it def involved me yelling fuck off at Jeff in the middle of a restaurant in front of his parents.
In retrospect it's kinda of funny. In a totally inappropriate way.
In retrospect it's kinda of funny. In a totally inappropriate way.
Wednesday, April 21, 2010
So Apparently Sleep is Important
Between Fibro pain and Bipolar hypo-mania moments (Brought to you by off-brand corn flakes! Buy some today!) sleep is a rare commodity. I am piecing together my day in a series of naps, fitful starts/stops, and full blown insomnia at night. My room is looking cleaner than ever. But I came into work late with shakes so bad I couldn't hold my drink without sloshing.
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