As someone who suffers from chronic neuropathic pain, I am always on the lookout for promising research. At this point I feel like I can deal with paralysis- but the pain is far more debilitating.
Neuropathic pain is extremely difficult to treat and I feel like I have tried most drugs, usually with side effects that reduce my ability to function properly, so not really worth it-plus they don't relieve the pain. I've been on gabapentin for 5 years now so my body is used to the effects of the drug. I know it is reducing my pain levels only because when I am late taking it, my pain level increases. I've decided that, for now, I am going to make a commitment to practice mindful meditation regularly as a way to decrease pain- along with my gabapentin. I'd love to not take any drugs, but if there is something that could improve the quality of life for me and countless others, I would be on board, in a heartbeat.
Drug may reduce chronic pain for spinal cord injuries - The Almagest
Monday, December 23, 2013
Monday, December 9, 2013
The Disability Treaty
I found this Op-Ed piece in the LATIMES today written by Mathew Reeve, Christopher Reeve's son. It is an important reminder that the Senate needs to ratify this important treaty to ensure equal treatment of people with disabilities globally. Read on!
Honoring Christopher Reeve's Legacy
Wednesday, October 9, 2013
You can't always get what you want, but...
A yoga teacher once told me that "stress is resistance to what is." Pushing against it is like banging your head against the wall; you don't get any where and you end up with a headache, or worse, a bloody head. As much as I know this, I still find myself, when in difficult situations, pushing instead of taking a deep breath and having faith. Thankfully, what I will call my angels, will intervene and I'll be reminded to focus on the present and all the grace I have received. I would like to say that I am then relieved of my worries, but they do return. I am at the very least, grateful for the reprieve. Okay, why am I blathering on about this?
Well, for one, Trevor and I are once again needing to move as our rent as sky rocketed due to the crazy rental market that is the SF Bay Area. For months we've been spending all our free time looking at apartments that either had stairs, or usually the case, the bathroom was too small for my wheelchair. I don't drive (yet) so it has to be close to public transportation and all the services I need. It has been stressful and disheartening. The best thing we found was, well, dingy and depressing, and I thought "well, if that is what it is going to be I will make the best of it." And I honestly felt at peace with that. After another day of looking at four apartments and not a one working out, the clock was ticking and I was ready to concede. The next day, we had yet another appointment and... we found the place! It's not exactly what we had hoped for, but it will give us what we need and we both feel positive about it. woohoo!!
Finding the apartment did not magically transform me into an enlightened being, but it lifted a few bricks off my back. I am now ready to tackle the other challenges ahead, and I will do my best to recall Miss Jane Fonda when I am ready to take my head to the wall, "don't forget to breathe." ahhhhhh
Another blessing was my third Rev Ride to support BORP (www.borp.org). It is seriously one of my favorite days of the year. It's one of those days that I wish I had a pause button. This year proved again the magic of community and that nothing beats having the wind blow through my hair as I wind through the hills of Sonoma! Here is me and my tandem ride partner and amazing friend Elizabeth as we get ready to ride 20 miles.
Well, for one, Trevor and I are once again needing to move as our rent as sky rocketed due to the crazy rental market that is the SF Bay Area. For months we've been spending all our free time looking at apartments that either had stairs, or usually the case, the bathroom was too small for my wheelchair. I don't drive (yet) so it has to be close to public transportation and all the services I need. It has been stressful and disheartening. The best thing we found was, well, dingy and depressing, and I thought "well, if that is what it is going to be I will make the best of it." And I honestly felt at peace with that. After another day of looking at four apartments and not a one working out, the clock was ticking and I was ready to concede. The next day, we had yet another appointment and... we found the place! It's not exactly what we had hoped for, but it will give us what we need and we both feel positive about it. woohoo!!
Finding the apartment did not magically transform me into an enlightened being, but it lifted a few bricks off my back. I am now ready to tackle the other challenges ahead, and I will do my best to recall Miss Jane Fonda when I am ready to take my head to the wall, "don't forget to breathe." ahhhhhh
Another blessing was my third Rev Ride to support BORP (www.borp.org). It is seriously one of my favorite days of the year. It's one of those days that I wish I had a pause button. This year proved again the magic of community and that nothing beats having the wind blow through my hair as I wind through the hills of Sonoma! Here is me and my tandem ride partner and amazing friend Elizabeth as we get ready to ride 20 miles.
Sunday, July 7, 2013
Sunday, June 30, 2013
Leap in spinal regeneration claimed | The Japan Times
Leap in spinal regeneration claimed | The Japan Times
This is very promising news on research. Dr. Wise Young is a highly regarded doc here in the states based out of Rutgers University. I have no idea if they will also look to use this treatment for TM but I don't see why not. Anyway- something to be hopeful about a few years down the line and all the more reason to stay fit!
This is very promising news on research. Dr. Wise Young is a highly regarded doc here in the states based out of Rutgers University. I have no idea if they will also look to use this treatment for TM but I don't see why not. Anyway- something to be hopeful about a few years down the line and all the more reason to stay fit!
Wednesday, June 26, 2013
Flip It
I find myself once again inspired by those dear to my heart who have left behind their earthly bodies but still live on to bestow wisdom- or grace droplets as I think I'll call them from now on. Before I get to the inspiring part I'll give a little background.
This spring has been an especially difficult time for me and my family. We held each other nervously through the winter as my dad went through a bone marrow transplant that resulted in a five month journey in the hospital. His journey was fulfilled with his death two-minutes to midnight on May 15th. Even as his health got more dire, we all still lived in the hope that he would fight it out. Lord knows he did his best to get better, but it was just too much in the end.
We celebrated his life with family and many friends in New Jersey. After a long day and a 6 hour flight filled with bouts of tears, Trevor and I arrived back to our apartment in Berkeley to find that our corporately owned apartment building is raising our rent 10%. Talk about insult to injury!
The last month I have been overwhelmed with trying to find a new apartment that is safe, wheelchair accessible, in a wheelchair accessible neighborhood, near public transportation and... affordable. All the while trying to negotiate some leniency with the corporate doohickies. Not an easy assignment. So here's me, feeling overwhelmed by life. Grieving and broke with all these other ailments that were just bringing me down- hard! And all I've been thinking is "I CAN'T, I CAN'T, I CAN'T" - not very inspiring or grateful, huh?
I was prepared to write a new blog post ticking of all the things that were wrong, why I'm so helpless and life is so challenging. But then- intervention from Dadio! I was going through my gigantic box of papers and I came across this little business card he gave me a few years ago. On the very top it reads "Attitude= the difference between Ordeal and Adventure." And it was just like the proverbial switch, my attitude just changed. I tapped into my strength and realized I don't have to feel helpless, that my reality may not be ideal at this given moment, but I have options and opportunities. I just need to be aware of them.
At this moment I feel positive with strength and love, so I need to remember this grace droplet so when that despair comes creeping back I can flip it. Thanks dad!
This spring has been an especially difficult time for me and my family. We held each other nervously through the winter as my dad went through a bone marrow transplant that resulted in a five month journey in the hospital. His journey was fulfilled with his death two-minutes to midnight on May 15th. Even as his health got more dire, we all still lived in the hope that he would fight it out. Lord knows he did his best to get better, but it was just too much in the end.
We celebrated his life with family and many friends in New Jersey. After a long day and a 6 hour flight filled with bouts of tears, Trevor and I arrived back to our apartment in Berkeley to find that our corporately owned apartment building is raising our rent 10%. Talk about insult to injury!
The last month I have been overwhelmed with trying to find a new apartment that is safe, wheelchair accessible, in a wheelchair accessible neighborhood, near public transportation and... affordable. All the while trying to negotiate some leniency with the corporate doohickies. Not an easy assignment. So here's me, feeling overwhelmed by life. Grieving and broke with all these other ailments that were just bringing me down- hard! And all I've been thinking is "I CAN'T, I CAN'T, I CAN'T" - not very inspiring or grateful, huh?
I was prepared to write a new blog post ticking of all the things that were wrong, why I'm so helpless and life is so challenging. But then- intervention from Dadio! I was going through my gigantic box of papers and I came across this little business card he gave me a few years ago. On the very top it reads "Attitude= the difference between Ordeal and Adventure." And it was just like the proverbial switch, my attitude just changed. I tapped into my strength and realized I don't have to feel helpless, that my reality may not be ideal at this given moment, but I have options and opportunities. I just need to be aware of them.
At this moment I feel positive with strength and love, so I need to remember this grace droplet so when that despair comes creeping back I can flip it. Thanks dad!
Tuesday, April 30, 2013
Repeat After Me
"I'm mad as hell and I'm not going to take it anymore!!" Don't just say this, open up your mouth and yell it, several times. Now stop and be present. Don't you feel just a little bit better? Today I learned a valuable lesson about anger, that you can actually harness its energy and feel good. Now, I'm not planning on going completely off the deep end a lá Peter Finch in Network (if you haven't seen this movie, it's fantastic!), but I'm allowing myself to be pissed off every once in awhile. Toss it out to the universe and create a positive from the negative
Saturday, January 5, 2013
Days Gone By
Struggling as of late to write on the blog, or write anything for that matter. I cope with the side effects of Transverse Myelitis- pain, fatigue and depression, yet so often my problems seem insignificant while so many are struggling with illness, poverty and profound grief. I've used this blog as an outlet to mainly share my triumphs and I desire to keep the focus on the positive, but I selfishly will use it now as a catharsis. Ready? . . . There- that feels better. Though 2012 I have absorbed my own and others hardships, I do feel I have overcome many obstacles and would like to reflect on and celebrate them. Mother Nature was on my side for most of the year and we enjoyed dry and temperate temperatures until recently. I had concerns that a rainy winter and spring would impede my new found freedom as my wheelchair cannot get wet and I already had mega fear about just being out alone in the big, bad world. Not having to worry about getting stuck in a deluge allowed me to face my fears. Now, having gained more confidence, if the sky threatens rain I just pack my poncho and go. Thankfully, I have not yet had to "rock" the stylish red poncho. If only they could make rain gear for a wheelchair that doesn't make one look like a float in a parade.
Being out on my own has helped me overcome my anxiety and pride about asking for help. If I need it, I'll ask and if it's offered at an appropriate time, I'll accept. To clarify my own boundaries, if I am able to do something on my own, I'll decline the offer. It's interesting how people relate to me now that I'm in a wheelchair. They sometimes want to share there own stories of injury or illness. My favorite this year was the random, yet seemingly sane, stranger who said to me as I passed him "I was in a wheelchair for 3 months and it sucked." Ummm, yeah. Thank you for sharing (insert profane word here). This is when I do my best to avoid eye contact and just ignore that person, though a large part of me would like to share with him that his comment was insensitive. I think that people just want to, in some way, communicate or identify with what they fear- so I just go about day and leave them to ponder. There is also the kindly woman who owns the nearby flower stand who asked me what was wrong with me and then offered to give me a massage. If we are going there- how about free flowers? (This was not offered).
Now that the cycling center is just a few blocks away (for real!) I was able to log many miles on the handcycle and also started going out on my own. Though hills are still a struggle, I can cycle on the flat trail by the bay for four miles.
October was a awesome month that kicked off with cycling event (the "Rev") in Wine Country where my friend Elizabeth and I rode tandem for over 20 miles and me and my team, The Cynphonics, raised over $5,000 for BORP. BORP is the organization that not only runs the cycling center but also runs many adaptive sports programs. Many thanks to all my incredible donors and supporters who made that happen!
A few days after the ride, Trevor and I were able to take a much needed getaway to Yosemite!
A visit from my dad shortly followed, making October one fun filled adventure after another.
As 2012 comes to a close, my focus now is get a J-O-B. I've kick started a new venture into grant writing and will start volunteering with a few organizations in January to get some experience. More to follow!
If you would like to see more photos of the ride,click here
Thanks to Scot Goodman who allowed me to use some of his professional photos!
Being out on my own has helped me overcome my anxiety and pride about asking for help. If I need it, I'll ask and if it's offered at an appropriate time, I'll accept. To clarify my own boundaries, if I am able to do something on my own, I'll decline the offer. It's interesting how people relate to me now that I'm in a wheelchair. They sometimes want to share there own stories of injury or illness. My favorite this year was the random, yet seemingly sane, stranger who said to me as I passed him "I was in a wheelchair for 3 months and it sucked." Ummm, yeah. Thank you for sharing (insert profane word here). This is when I do my best to avoid eye contact and just ignore that person, though a large part of me would like to share with him that his comment was insensitive. I think that people just want to, in some way, communicate or identify with what they fear- so I just go about day and leave them to ponder. There is also the kindly woman who owns the nearby flower stand who asked me what was wrong with me and then offered to give me a massage. If we are going there- how about free flowers? (This was not offered).
Now that the cycling center is just a few blocks away (for real!) I was able to log many miles on the handcycle and also started going out on my own. Though hills are still a struggle, I can cycle on the flat trail by the bay for four miles.
 |
| The Cynphonics! |
A few days after the ride, Trevor and I were able to take a much needed getaway to Yosemite!
A visit from my dad shortly followed, making October one fun filled adventure after another.
As 2012 comes to a close, my focus now is get a J-O-B. I've kick started a new venture into grant writing and will start volunteering with a few organizations in January to get some experience. More to follow!
If you would like to see more photos of the ride,click here
Thanks to Scot Goodman who allowed me to use some of his professional photos!
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